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Protocol - Disorders of Respiratory Control with Inherent Autonomic Dysregulation

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This section will be completed when reviewed by an Expert Review Panel.

Availability:

Publicly available

Description:

The American Thoracic Society (ATS) policy statement regarding Congenital Central Hypoventilation Syndrome (CCHS) is a comprehensive guide for diagnosing an individual with CCHS by evaluating their phenotype and determining their paired-like homeobox gene (PHOX2B) genotype. Evaluation via the ATS statement involves completion of (1) the Autonomic Nervous System Questionnaire (ANSQ), (2) stepwise PHOX2B genetic testing, and (3) physiologic and other clinical testing.

  • The ANSQ is a self-administered questionnaire including 46 questions with the purpose of measuring Autonomic Nervous System Dysregulation. It is also available as a REDCap Registry through a research protocol.
  • Genetic testing to identify CCHS-related mutations in the PHOX2B gene involves step-wise testing with Step 1. PHOX2B Screening Test, Step 2. PHOX2B Sequencing Test, and Step 3. PHOX2B MLPA Test.
  • Physiologic and other clinical testing during wakefulness and sleep and other testing to evaluate patients in activities of daily living in keeping with the ATS 2010 Statement on CCHS.

Protocol:

Autonomic Nervous System Questionnaire (ANSQ):

First we are going to draw your family tree. Be sure to include any abortions (spontaneous and elective) and any infant deaths including sudden infant death syndrome (SIDS). (See step by step family tree diagram.)

Now that we’ve drawn your family tree, I’m going to ask you specific questions that you should answer first about the individual with CCHS (might be you or your child) and then about anyone you’ve described in your family tree.

Are you or any other adults (18 years of age or older) in your family:

Over 6’2?

Under 4’8?

Over 200 lbs?

Under 90 lbs?

Have any minors (under 18 years of age) in your family had atypical growth patterns?

Delayed growth?

Accelerated growth?

Have you or anyone in your family ever been diagnosed with obesity?

Yes ___ No ___

Do you or anyone in your family have growth hormone deficiency or excess?

Yes ___ No ___

Do you or anyone in your family have any known significant medical problems?

Yes ___ No ___

Remember when you answer these questions we would like to know if you ever experienced these problems at any time - as an infant, child or adult. Also, tell me first about you and then about any of the people you told me about when we drew the family tree.

Such as:

Endocrine problems:

Have you ever had low blood sugar (hypoglycemia) or high blood sugar?

Diabetes: childhood onset, pregnancy related, or adult onset

Thyroid disease

Phenochromocytoma

Parathyroid tumor

Carcinoid

Tumors of neural crest origin such as neuroblastoma,

ganglioneuroma, ganglioneuroblastoma

Heart disease:

Hypertension

Cardiac pacemaker

Bypass surgery

Heart attack

Mitral valve prolapse

Cancer and type:

GI cancer - type

cancers of/in the chest

brain tumor

other cancers

Hearing problems:

Waardenberg syndrome - a white forelock of hair

GI problems:

Hirschsprung disease

Colic as an infant

Any unusual skin color - increase or decrease in pigmentation?

Are there any genetic disease that run in your family? Inborn errors?

Any history of Parkinson’s disease?

Have you ever had a wandering eye/told you have strabismus?

Other

Other

Other

Use the following scoring system to rate the following questions:

Frequency Score:

0= never or insignificant

Severity Score:

0= never

1= mild or infrequent (once per month)

1= mild symptoms

2= moderate symptoms

2= frequent (once per week)

3= severe symptoms

3= consistent once every 2-3 days

4= consistent (every day)

Cardiovascular System Questions:

Remember when you answer these questions we would like to know if you ever experienced these symptoms at any time - as an infant, child or adult. Also, tell me first about you and then about any of the people you told me about when we drew the family tree.

1. Have you experienced episodes of dizziness in the past?

How severe is this problem?
Severity score 0-1-2-3

How often:
Frequency score 0-1-2-3-4

Age at onset of symptoms

When do symptoms occur:

Are there ever any precipitating or aggravating factors:

Early morning

After a meal

Prolonged standing

Exertion/walking

Is the dizziness ever associated with:

palpitations
nausea
vertigo


blurred vision
weakness
tremulousness


anxiety
pallor
clammy skin


Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

2. Have you experienced episodes of blurred vision or glare in the past?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with anything? Dizziness? Loss of consciousness?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

3. Have you experienced episodes of loss of consciousness in the past?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with anything? Dizziness? Overheating? Blurred vision?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

4. Have you experienced throbbing pounding headaches (not migraine) in the past?

How severe is this problem?
Severity score 0-1-2-3

Are any associated with your face becoming pale or becoming flushed or with sweating

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

5. Have you ever had facial pallor - paleness of the face associated with sweating?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

6. Have you ever had really cold fingers or toes?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

7. Have you ever had Raynaud’s phenomenon where your fingers go white, then blue and red?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

8. Have you ever been told by a doctor that you have:

postural hypotension

vasovagal syncope

paroxysmal hypertension

cardiac dysrhythmia

decreased heart rate variability

altered vascularity of face

decreased perfusion to extremities

Gastrointestinal System Questions

With these questions we would like to know if you ever experienced these symptoms at any time - as an infant, child or adult. Also, tell me first about you and then about any of the people you told me about when we drew the family tree.

9. Have you ever had profuse oral secretions/drooling?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

10. Have you ever had dysphagia - difficulty swallowing?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

11. Have you ever had any of the following symptoms (gastroparesis)

Anorexia

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Early satiety

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Persistent sense of bloating/Fullness with abdominal distension

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Frequent nausea

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Recurrent vomiting

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

12. Have you ever had abdominal surgery? Do you have any scars on your body?

Date and reason

13. Have you ever been diagnosed or evaluated for Hirschsprung disease?

14. Have you ever had had constipation defined as inability to defecate without strenuous effort, presence of hard stools, bowel movements twice a week on average, regular use of mineral oil or other mild laxative?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for this?

If yes, was a diagnosis made?

15. Have you ever had (autonomic) diarrhea unrelated to a viral illness?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

16. Have you ever had abdominal pain? Have you experienced colic as an infant?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Neurologic System Questions

Remember when you answer these questions we would like to know if you ever experienced these symptoms at any time - as an infant, child or adult. Also, tell me first about you and then about any of the people you told me about when we drew the family tree.

17. Have you ever had migraine or cluster headaches?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with

ipsilateral (same side as the headache) eye watering

ipsilateral nasal drainage

miosis (pupil constriction)

ptosis (dropping eyelid)

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

18. Have you ever been told you had decreased muscle tone in your arms or legs?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

19. Have you ever had severe burning pain or causalgia of any body part? (For example - ears, fingers, toes, etc)

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

20. Have you ever had an altered perception of pain-either a high pain tolerance/not feel pain or a low pain tolerance/very sensitive to pain?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Ocular Questions

Remember when you answer these questions we would like to know if you ever experienced these symptoms at any time - as an infant, child or adult. Also, tell me first about you and then about any of the people you told me about when we drew the family tree.

21. Do you have unequal pupils?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

22. Do you have droopy eyelids?

Right Left Both

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made? Did they call it ptosis?

23. Were you told that your eyes do not respond well to light?

Right Left Both

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

24. Do you have tightly constricted pupils?

Right Left Both

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made? Was this called miosis?

25. Have you had problems with tearing?

Too little
absent
too much
inappropriate


How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

26. Have you ever had trouble with your vision accommodating or converging, i.e. fixing your gaze from far to near?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Psychological System Questions

Remember when you answer these questions we would like to know if you ever experienced these symptoms at any time - as an infant, child or adult. Also, tell me first about you and then about any of the people you told me about when we drew the family tree.

27. Have you ever had problems with anxiety?

Absent anxiety
Heightened anxiety


How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

28. Have you ever been diagnosed as having a learning disability, either verbal or non-verbal?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Was medication such as ritalin?     prozac?     caffeine?     ever prescribed?

29. Have you ever had problems with recognizing social cues around you?

Have you ever had problems making eye contact?

Do you comprehend facial expression, body language, gesture, and tone of voice?

Do you have social interests but lack the ability to initiate and maintain social relationships?

Renal and Urinary System Questions

Remember when you answer these questions we would like to know if you ever experienced these symptoms at any time - as an infant, child or adult. Also, tell me first about you and then about any of the people you told me about when we drew the family tree.

30. Have you ever had problems with retaining your urine or incomplete emptying of your bladder?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

31. Have you ever had problems with frequent urination?

During the day or at night?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

32. Have you ever had problems with urgency to urinate?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

33. Have you ever had problems with urinary incontinence?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Reproductive System Questions

Remember when you answer these questions we would like to know if you ever experienced these symptoms at any time - as an infant, child or adult. Also, tell me first about you and then about any of the people you told me about when we drew the family tree

34. Have you ever had problems with loss of libido?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

35. Adult male only: Have you ever had problems with erection or ejaculation?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

36. Adult male only: Have you ever had problems with priapism (the penis remains erect when not in use)?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Respiratory System Questions

Remember when you answer these questions we would like to know if you ever experienced these symptoms at any time - as an infant, child or adult. Also, tell me first about you and then about any of the people you told me about when we drew the family tree.

37. Have you ever had problems with stridor?

Inspiration
Expiration


How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

38. Do you notice or have you been told that you either sigh a lot or do not sigh at all?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

39. Have you ever had problems with apnea or an apparent life threatening event?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

40. Have you ever been given a diagnosis of alveolar hypoventilation?

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

41. Have you ever had problems with breath holding spells?

pallid
cyanotic
with/without loss of consciousness


How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

42. Has there ever been a SIDS death in your family?

43. Has anyone in the family been on a home monitor? As an infant, child, or adult?

Sudomotor System Questions

Remember when you answer these questions we would like to know if you ever experienced these symptoms at any time - as an infant, child or adult. Also, tell me first about you and then about any of the people you told me about when we drew the family tree.

44. Have you ever had problems with difficulty sweating?

Lack of sweating
local
generalized


Profuse sweating
face body
relation to ingestion of food


How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

45. Have you ever had problems with body temperature?

Too hot/hyperpyrexia

Too cold/hypothermia

How severe is this problem?
Severity score 0-1-2-3

Age at onset of symptoms

When do symptoms occur

Associated with any other symptoms?

How often:
Frequency score 0-1-2-3-4

Last event

Did you seek medical attention for these events?

If yes, was a diagnosis made?

Additional Questions (Answer "yes" or "no):

Have any members of your family tree been diagnosed with the following:

  1. Obstructive sleep apnea
  2. Asthma
  3. Snoring
  4. Depression (any kind)
  5. Seizures
  6. Multiple Sclerosis
  7. Prematurity
  8. Down syndrome
  9. Ulcerative colitis
    Crohn’s disease
    Irritable bowel syndrome
  10. Gastroesophageal reflux
  11. Stillbirths
  12. Issues related to menses

Genetic Testing:

Genetic testing (stepwise) is used to identify a CCHS-related PHOX2B mutation (required to confirm the diagnosis of CCHS). If Step 1 testing is negative, then Step 2 testing should be performed. If Step 2 testing is negative, then Step 3 testing should be performed. Normal PHOX2B genotype is 20/20 reflecting the number of alanines on each allele. Patients with CCHS are heterozygous for a disease-causing PHOX2B mutation. This testing should be done via a CLIA-certified laboratory. Information regarding these laboratories is located on [link[www.genetests.org|www.genetests.org]]

  • Step 1. PHOX2B Screening Test (also known as Fragment Analysis or Genotyping Analysis): identifies all polyalanine repeat expansion mutations (PARMs)(genotypes 20/24-20/33), the large frameshift non-PARMs (NPARMs), and somatic mosaicism. It is the only clinically available test that will identify low level somatic mosaicism.
  • Step 2. PHOX2B Sequencing Test: identifies all known PARMs (genotypes 20/24-20/33) and all NPARMs. Does NOT identify low level somatic mosaicism.
  • Step 3. PHOX2B MLPA Test: identifies whole gene or whole exon deletions and duplications.

Physiologic and other clinical testing:

Physiologic and other clinical testing that follows the 2010 ATS Statement on CCHS recommendations is optimal to diagnose and provide conservative management of affected patients, with aim for longitudinal follow-up and objective measures before and after pharmacological intervention.

  • Detailed recording in a pediatric respiratory physiology laboratory for documentation of hypoventilation or absent spontaneous breathing asleep (most severe in non-REM sleep) and in varied activities of daily living while awake over the course of 4 days and 4 nights to adequately represent the patient’s needs. A subset of individuals with CCHS will hypoventilate awake and asleep. Testing should be completed during spontaneous breathing as well as with artificial ventilatory support.
    • Tidal volume (pneumotachograph) measurement
      • In CCHS below 7 cc/kg (usually below 5 cc/kg and lower asleep)
      • Normal range in healthy controls is 7-10 cc/kg
    • Movement (respiratory inductance plethysmography) of the chest and abdomen
    • Respiratory frequency
      • In CCHS, respiratory rates will typically be above norms for age.
      • General ranges for healthy norms is provided below:
        • Birth to 6 weeks: 30-60 breaths per minute (bpm)
        • 6 months: 25-40 bpm
        • 3 years: 20-30 bpm
        • 6 years: 18-25 bpm
        • 10 years: 12-15 bpm
        • Adults: 12-20 bpm
    • Hemoglobin saturation with visible pulse waveform and beat-to-beat measures
      • In CCHS below 92% during sleep and, if awake hypoventilation, when awake
    • End tidal carbon dioxide with visible breath-to-breath measures
      • In CCHS above 50 mmHg during sleep, and if awake hypoventilation, when awake
    • ECG
      • In CCHS decreased heart rate variability and in a subset of cases sinus pauses
    • If possible, measures of blood pressure and cerebral oxygenation/regional blood flow should be included
  • Exogenous and endogenous ventilatory challenges in response to hypoxemia and hypercarbia (awake and asleep)
    • In CCHS lack of a consistent or sustained normal ventilatory or cardiovascular response to clinical challenges with Hypercarbia (5%)/Hyperoxia (95%), Hypercarbia (7%)/Hypoxia (14%), and Hypoxia (5 breaths of nitrogen).
  • 72-hour Holter recording annually to evaluate for cardiac sinus pauses
  • Neurocognitive testing
  • Evaluation for tumors of neural crest origin if PHOX2B genotype 20/28-20/33 or NPARM
  • Evaluation for Hirschsprung disease
  • Age and symptom-specific autonomic testing
    • Birth through adult Poincaré plots of r-r +1 vs. r-r (cigar pattern in CCHS), pupillometry (typically decreased pupillary response to light but PHOX2B genotype-specific), and peripheral skin temperatures (typically mildly reduced)6 years through adult: head-up tilt (typically uncoupling of blood pressure and heart rate and altered cerebral regional blood flow), thermoregulatory sweat test (typically altered sweating pattern and reduced peripheral skin temperature), heart rate-deep breathing, Valsalva maneuver, and more depending on child’s symptoms and ability to cooperate.

Personnel and Training Required

The interviewer must be trained to conduct personal interviews with individuals from the general population. The interviewer must be trained and found to be competent (i.e., tested by an expert) at the completion of personal interviews. The interviewer should be trained to prompt respondents further if a "don’t know" response is provided.

Equipment Needs

PHOX2B genetic testing: Clinical Laboratory Improvement Amendments (CLIA)-certified laboratories listed at [link[www.genetests.org|www.genetests.org]].

Physiologic testing:

NAME

FUNCTION

Audiovisual Systems

Audiovisual recording

Somnostar Data Acquisition System (Viasys)

Recording, therapist-assisted analysis, and reporting of physiological data, including tidal volume, inductance plethysmography of chest and abdomen, hemoglobin saturation (SpO2), end tidal carbon dioxide (ETCO2), ECG, blood pressure, and near-infrared spectroscopy reflecting cerebral oxygenation/regional blood flow (rSO2) during sleep and wakefulness (in varied activities of daily living asleep and awake, including head-up tilt)

Pneumotachograph (Korr Technologies)

Measures tidal volume

Oridion Capnostream 20

Measures continuous beat-to-beat SpO2 and pulse waveform as well as breath-to-breath ETCO2

Somanetics INVOS oximeter

Measures continuous regional cerebral blood flow/oxygenation (rSO2) by near-infrared spectroscopy (NIRS)

Neuroptics PLR 2000 Pupillometer

Measures pupillary response to fixed light stimulus with calculation of specific autonomic measures

Nexfin

Measures continuous beat-to-beat arterial blood pressure monitor (finger)

Welch Allyn Vital Signs Monitor 300

Measures brachial blood pressure monitor (arm)

Thermoregulatory Sweat Chamber with infrared Camera

Qualitative sweat analysis for pre- and postganglionic sudomotor function as well as Thermalprint distribution with heat map

WR Medical Electronics System

Autonomic testing data system to evaluate heart rate deep breathing test, Valsalva maneuver, and QSweat test (postganglionic sudomotor function)

Peripheral Skin Temperature (Exergen)

Measures peripheral skin temperature

Requirements

Requirement CategoryRequired
Average time of greater than 15 minutes in an unaffected individualYes
Major equipmentNo
Specialized requirements for biospecimen collectionNo
Specialized trainingNo

Mode of Administration

Self-administered

Life Stage:

Infant, Toddler, Child, Adolescent, Adult, Senior, All Ages, Pregnancy

Specific Instructions:

The Rare Genetic Conditions Working Group (WG) acknowledges that (1) the Autonomic Nervous System Questionnaire (ANSQ) can be administered manually or through a Congenital Central Hypoventilation Syndrome (CCHS) REDCap Registry; (2) Genetic PHOX2B testing sites for step-wise testing are described in the 2010 American Thoracic Society (ATS) Statement on CCHS and are provided at [link[www.genetests.org|www.genetests.org]]; and (3) the physiologic and autonomic testing would need to be provided in a laboratory with experience in polysomnography with application in wakefulness and sleep-and, ideally, in a center with extensive expertise in CCHS. The other clinical testing would need to be provided in a pediatric specialty program with extensive experience in ventilator management for children and if possible adults with disordered respiratory control and autonomic regulation.

Additionally, the WG recommends the PhenX Family History measure be used to capture information on family members in reference to the family tree in the ANSQ.

Research Domain Information

Release Date:

April 30, 2015

Definition

The measure is used to assess dysregulation of the autonomic nervous system and whether the individual may have characteristic autonomic dysregulation as anticipated in congenital central hypoventilation syndrome (CCHS).

Purpose

Congenital central hypoventilation syndrome (CCHS) represents the extreme end of a spectrum of autonomic nervous system dysregulation, characterized by hypoventilation during sleep (and, in more severe cases, during wakefulness and sleep), with markedly diminished or absent ventilatory responses to hypoxia/hypercarbia, coupled with signs of autonomic dysfunction.

Selection Rationale

Collecting data on Congenital Central Hypoventilation Syndrome (CCHS) in a standard fashion is critical to understanding the condition throughout childhood and longitudinally throughout adulthood and for treatment of individuals with this condition.

The Rare Genetic Conditions Working Group (WG) recommends following the American Thoracic Society (ATS) policy statement regarding CCHS as a method for identifying appropriate participants for clinical research and epidemiological studies. The WG also notes that completion of the Autonomic Nervous System Questionnaire (ANSQ), step-wise PHOX2B genetic testing, and physiologic (and other clinical) testing is high burden but essential to fully characterize the CCHS phenotype and provide genetic confirmation of the diagnosis.

Language

English

Standards

StandardNameIDSource
Common Data Elements (CDE)Congenital Central Hypoventilation Questionnaire Assessment Text4798137CDE Browser

Process and Review

This section will be completed when reviewed by an Expert Review Panel.

Source

Weese-Mayer, D. E., Berry-Kravis, E. M., Ceccherini, I., Keens, T. G., Loghmanee, D., & Trang, H; American Thoracic Society Congenital Central Hypoventilation Syndrome Subcommittee. (2010). An official American Thoracic Society clinical policy statement: Congenital central hypoventilation syndrome. Genetic basis, diagnosis, and management. American Journal of Respiratory and Critical Care Medicine, 181, 626-644.

Weese-Mayer, D. E., Patwari, P. P., Rand, C. M., Diedrich, A. M., Kuntz, N. L., & Berry-Kravis, E. M. (2012). Congenital Central Hypoventilation Syndrome (CCHS) and PHOX2B mutations. In D. Robertson, I. Biaggioni, G. Burnstock, P. A. Low, & J. F. R. Paton (Eds.), Primer on the autonomic nervous system (pp. pp. 445-450). Oxford: Academic Press.

Weese-Mayer, D. E., Silvestri, J. M., Huffman, A. D., Smok-Pearsall, S. M., Kowal, M. H., Maher, B. S., Cooper. M. E., & Marazita, M. L. (2001). Case/control family study of ANS dysfunction in idiopathic congenital central hypoventilation syndrome. American Journal of Medical Genetics, 100, 237-245.

General References

Carroll, M. S., Patwari, P. P., Kenny, A. S., Brogadir, C. D., Stewart, T. M., & Weese-Mayer, D. E. (2014). Residual chemosensory response to exogenous ventilatory challenges in paired-like homeobox 2B mutation-confirmed congenital central hypoventilation syndrome. Journal of Applied Physiology, 116, 439-450.

Gordon, S. C., Rand, C. M., & Weese-Mayer, D. E. (2013). Congenital central hypoventilation syndrome. In Rare Disease Database. Danbury, CT: National Organization for Rare Disorders. [link[www.rarediseases.org|www.rarediseases.org]].

Jennings, L. J., Yu, M., Rand, C. M., Kravis, N., Berry-Kravis, E. M., Patwari, P. P., & Weese-Mayer, D. E. (2012). Variable human phenotype associated with novel deletions of the PHOX2B gene. Pediatric Pulmonology, 47(2),153-161.

Jennings, L. J., Yu, M., Zhou, L., Rand, C. M., Berry-Kravis, E. M., & Weese-Mayer, D. E. (2010). Comparison of PHOX2B testing methods in the diagnosis of congenital central hypoventilation syndrome and mosaic carriers. Diagnostic Molecular Pathology, 19(4), 224-231.

Marazita, M. L., Maher, B. S., Cooper, M. E., Silvestri, J. M., Huffman, A. D., Smok-Pearsall, S. M., Kowal, M. H., & Weese-Mayer, D. E. (2001). Genetic segregation analysis of autonomic nervous system dysfunction in families of probands with congenital central hypoventilation syndrome. American Journal of Medical Genetics, 100, 229-236.

Patwari, P. P., Stewart, T. M., Rand, C. M., Carroll, M. S., Kuntz, N. L., Kenny, A. S., Brogadir, C. D., & Weese-Mayer, D. E. (2012). Pupillometry in Congenital Central Hypoventilation Syndrome (CCHS): Quantitative evidence of autonomic nervous system dysregulation. Pediatric Research, 71(3), 280-285.

Weese-Mayer, D. E., Marazita, M. L., Rand, C. M., & Berry-Kravis, E. M. (2004). Congenital central hypoventilation syndrome. In R. A. Pagon, M. P. Adam, T. D. Bird, et al. (Eds.), GeneReviews™ [Internet]. Seattle, WA: University of Washington. [link[webmail.childrensmemorial.org/owa/redir.aspx?C=d8fcf6dc05e54bd380c1cd5be1c9f686&URL=http%3a%2f%2fwww.ncbi.nlm.nih.gov%2fbooks%2fNBK1427%2f|www.ncbi.nlm.nih.gov/books/NBK1427/]].

Protocol ID:

220801

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX220801_CCHS_NSQ_Altered_Pain_Perception_FrequencyPX220801340700Neurologic System Questions - How often:4N/A
PX220801_CCHS_NSQ_Altered_Pain_Perception_Last_EventPX220801340800Neurologic System Questions - Last event4N/A
PX220801_CCHS_NSQ_Altered_Pain_Perception_Medical_AttentionPX220801340900Neurologic System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_NSQ_Altered_Pain_Perception_DiagnosisPX220801341000Neurologic System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_OQ_Unequal_PupilsPX220801350100Ocular Questions - Do you have unequal pupils?4N/A
PX220801_CCHS_OQ_Unequal_Pupils_SeverityPX220801350200Ocular Questions - How severe is this problem?4N/A
PX220801_CCHS_OQ_Unequal_Pupils_AgePX220801350300Ocular Questions - Age at onset of symptoms4N/A
PX220801_CCHS_OQ_Unequal_Pupils_TimePX220801350400Ocular Questions - When do symptoms occur:4N/A
PX220801_CCHS_OQ_Unequal_Pupils_Associated_FactorPX220801350500Ocular Questions - Associated with any other symptoms4N/A
PX220801_CCHS_OQ_Unequal_Pupils_FrequencyPX220801350600Ocular Questions - How often:4N/A
PX220801_CCHS_OQ_Unequal_Pupils_Last_EventPX220801350700Ocular Questions - Last event4N/A
PX220801_CCHS_OQ_Unequal_Pupils_Medical_AttentionPX220801350800Ocular Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_OQ_Unequal_Pupils_DiagnosisPX220801350900Ocular Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_OQ_Droopy_EyelidsPX220801360100Ocular Questions - Do you have droopy eyelids?4N/A
PX220801_CCHS_OQ_Droopy_Eyelids_EyePX220801360200Ocular Questions - which eye?4N/A
PX220801_CCHS_OQ_Droopy_Eyelids_SeverityPX220801360300Ocular Questions - How severe is this problem?4N/A
PX220801_CCHS_OQ_Droopy_Eyelids_AgePX220801360400Ocular Questions - Age at onset of symptoms4N/A
PX220801_CCHS_OQ_Droopy_Eyelids_TimePX220801360500Ocular Questions - When do symptoms occur:4N/A
PX220801_CCHS_OQ_Droopy_Eyelids_Associated_FactorPX220801360600Ocular Questions - Associated with any other symptoms4N/A
PX220801_CCHS_OQ_Droopy_Eyelids_FrequencyPX220801360700Ocular Questions - How often:4N/A
PX220801_CCHS_OQ_Droopy_Eyelids_Last_EventPX220801360800Ocular Questions - Last event4N/A
PX220801_CCHS_OQ_Droopy_Eyelids_Medical_AttentionPX220801360900Ocular Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_OQ_Droopy_Eyelids_DiagnosisPX220801361000Ocular Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_OQ_Respond_To_LightPX220801370100Ocular Questions - Were you told that your eyes do not respond well to light?4N/A
PX220801_CCHS_OQ_Respond_To_Light_EyePX220801370200Ocular Questions - which eye?4N/A
PX220801_CCHS_OQ_Respond_To_Light_SeverityPX220801370300Ocular Questions - How severe is this problem?4N/A
PX220801_CCHS_OQ_Respond_To_Light_AgePX220801370400Ocular Questions - Age at onset of symptoms4N/A
PX220801_CCHS_OQ_Respond_To_Light_TimePX220801370500Ocular Questions - When do symptoms occur:4N/A
PX220801_CCHS_OQ_Respond_To_Light_Associated_FactorPX220801370600Ocular Questions - Associated with any other symptoms4N/A
PX220801_CCHS_OQ_Respond_To_Light_FrequencyPX220801370700Ocular Questions - How often:4N/A
PX220801_CCHS_OQ_Respond_To_Light_Last_EventPX220801370800Ocular Questions - Last event4N/A
PX220801_CCHS_OQ_Respond_To_Light_Medical_AttentionPX220801370900Ocular Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_OQ_Respond_To_Light_DiagnosisPX220801371000Ocular Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_OQ_Tightly_Constricted_PupilsPX220801380100Ocular Questions - Do you have tightly constricted pupils?4N/A
PX220801_CCHS_OQ_Tightly_Constricted_Pupils_EyePX220801380200Ocular Questions - which eye?4N/A
PX220801_CCHS_OQ_Tightly_Constricted_Pupils_SeverityPX220801380300Ocular Questions - How severe is this problem?4N/A
PX220801_CCHS_OQ_Tightly_Constricted_Pupils_AgePX220801380400Ocular Questions - Age at onset of symptoms4N/A
PX220801_CCHS_OQ_Tightly_Constricted_Pupils_TimePX220801380500Ocular Questions - When do symptoms occur:4N/A
PX220801_CCHS_OQ_Tightly_Constricted_Pupils_Associated_FactorPX220801380600Ocular Questions - Associated with any other symptoms4N/A
PX220801_CCHS_OQ_Tightly_Constricted_Pupils_FrequencyPX220801380700Ocular Questions - How often:4N/A
PX220801_CCHS_OQ_Tightly_Constricted_Pupils_Last_EventPX220801380800Ocular Questions - Last event4N/A
PX220801_CCHS_OQ_Tightly_Constricted_Pupils_Medical_AttentionPX220801380900Ocular Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_OQ_Tightly_Constricted_Pupils_DiagnosisPX220801381000Ocular Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_OQ_Tearing_ProblemPX220801390100Ocular Questions - Have you had problems with tearing?4N/A
PX220801_CCHS_OQ_Tearing_Problem_SeverityPX220801390200Ocular Questions - How severe is this problem?4N/A
PX220801_CCHS_OQ_Tearing_Problem_AgePX220801390300Ocular Questions - Age at onset of symptoms4N/A
PX220801_CCHS_OQ_Tearing_Problem_TimePX220801390400Ocular Questions - When do symptoms occur:4N/A
PX220801_CCHS_OQ_Tearing_Problem_Associated_FactorPX220801390500Ocular Questions - Associated with any other symptoms4N/A
PX220801_CCHS_OQ_Tearing_Problem_FrequencyPX220801390600Ocular Questions - How often:4N/A
PX220801_CCHS_OQ_Tearing_Problem_Last_EventPX220801390700Ocular Questions - Last event4N/A
PX220801_CCHS_OQ_Tearing_Problem_Medical_AttentionPX220801390800Ocular Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_OQ_Tearing_Problem_DiagnosisPX220801390900Ocular Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_OQ_Vision_Accommodating_TroublePX220801400100Ocular Questions - Have you ever had trouble with your vision accommodating or converging, i.e. fixing your gaze from far to near?4N/A
PX220801_CCHS_OQ_Vision_Accommodating_Trouble_SeverityPX220801400200Ocular Questions - How severe is this problem?4N/A
PX220801_CCHS_OQ_Vision_Accommodating_Trouble_AgePX220801400300Ocular Questions - Age at onset of symptoms4N/A
PX220801_CCHS_OQ_Vision_Accommodating_Trouble_TimePX220801400400Ocular Questions - When do symptoms occur:4N/A
PX220801_CCHS_OQ_Vision_Accommodating_Trouble_Associated_FactorPX220801400500Ocular Questions - Associated with any other symptoms4N/A
PX220801_CCHS_OQ_Vision_Accommodating_Trouble_FrequencyPX220801400600Ocular Questions - How often:4N/A
PX220801_CCHS_OQ_Vision_Accommodating_Trouble_Last_EventPX220801400700Ocular Questions - Last event4N/A
PX220801_CCHS_OQ_Vision_Accommodating_Trouble_Medical_AttentionPX220801400800Ocular Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_OQ_Vision_Accommodating_Trouble_DiagnosisPX220801400900Ocular Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_PSQ_AnxietyPX220801410100Psychological System Questions - Have you had problems with anxiety?4N/A
PX220801_CCHS_PSQ_Anxiety_SeverityPX220801410200Psychological System Questions - How severe is this problem?4N/A
PX220801_CCHS_PSQ_Anxiety_AgePX220801410300Psychological System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_PSQ_Anxiety_TimePX220801410400Psychological System Questions - When do symptoms occur:4N/A
PX220801_CCHS_PSQ_Anxiety_Associated_FactorPX220801410500Psychological System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_PSQ_Anxiety_FrequencyPX220801410600Psychological System Questions - How often:4N/A
PX220801_CCHS_PSQ_Anxiety_Last_EventPX220801410700Psychological System Questions - Last event4N/A
PX220801_CCHS_PSQ_Anxiety_Medical_AttentionPX220801410800Psychological System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_PSQ_Anxiety_DiagnosisPX220801410900Psychological System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_PSQ_Learning_DisabilityPX220801420100Psychological System Questions - Have you ever been diagnosed as having a learning disability, either verbal or non-verbal?4N/A
PX220801_CCHS_PSQ_Learning_Disability_SeverityPX220801420200Psychological System Questions - How severe is this problem?4N/A
PX220801_CCHS_PSQ_Learning_Disability_AgePX220801420300Psychological System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_PSQ_Learning_Disability_TimePX220801420400Psychological System Questions - When do symptoms occur:4N/A
PX220801_CCHS_PSQ_Learning_Disability_Associated_OtherPX220801420500Psychological System Questions - Is the learning disability ever associated with other factor4N/A
PX220801_CCHS_PSQ_Learning_Disability_FrequencyPX220801420600Psychological System Questions - How often:4N/A
PX220801_CCHS_PSQ_Learning_Disability_Medical_AttentionPX220801420700Psychological System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_PSQ_Learning_Disability_DiagnosisPX220801420800Psychological System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_PSQ_Learning_Disability_MedicationPX220801420900Psychological System Questions - Was medication such as ritalin? prozac? caffeine? ever prescribed?4N/A
PX220801_CCHS_PSQ_Recognizing_Social_CuesPX220801430100Psychological System Questions - Have you had problems with recognizing social cues ?4N/A
PX220801_CCHS_PSQ_Eye_Contact_ProblemPX220801430200Psychological System Questions - Have you ever had problems making eye contact?4N/A
PX220801_CCHS_PSQ_Recognizing_Social_Cues_ComprehendPX220801430300Psychological System Questions - Do you comprehend facial expression, body language, gesture, and tone of voice?4N/A
PX220801_CCHS_PSQ_Recognizing_Social_Cues_InabilityPX220801430400Psychological System Questions - Do you have social interests but lack the ability to initiate and maintain social relationships?4N/A
PX220801_CCHS_RUSQ_Retaining_UrinePX220801440100Renal and Urinary System Questions - Have you ever had problems with retaining your urine or incomplete emptying of your bladder?4N/A
PX220801_CCHS_RUSQ_Retaining_Urine_SeverityPX220801440200Renal and Urinary System Questions - How severe is this problem?4N/A
PX220801_CCHS_RUSQ_Retaining_Urine_AgePX220801440300Renal and Urinary System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RUSQ_Retaining_Urine_TimePX220801440400Renal and Urinary System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RUSQ_Retaining_Urine_Associated_OtherPX220801440500Renal and Urinary System Questions - Is the retaining urine ever associated with other factor4N/A
PX220801_CCHS_RUSQ_Retaining_Urine_FrequencyPX220801440600Renal and Urinary System Questions - How often:4N/A
PX220801_CCHS_RUSQ_Retaining_Urine_Last_EventPX220801440700Renal and Urinary System Questions - Last event4N/A
PX220801_CCHS_RUSQ_Retaining_Urine_Medical_AttentionPX220801440800Renal and Urinary System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RUSQ_Retaining_Urine_DiagnosisPX220801440900Renal and Urinary System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RUSQ_Frequent_UrinationPX220801450100Renal and Urinary System Questions - Have you had problems with frequent urination?4N/A
PX220801_CCHS_RUSQ_Frequent_Urination_SeverityPX220801450200Renal and Urinary System Questions - How severe is this problem?4N/A
PX220801_CCHS_RUSQ_Frequent_Urination_AgePX220801450300Renal and Urinary System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RUSQ_Frequent_Urination_TimePX220801450400Renal and Urinary System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RUSQ_Frequent_Urination_Associated_OtherPX220801450500Renal and Urinary System Questions - Is the frequent urination ever associated with other factor4N/A
PX220801_CCHS_RUSQ_Frequent_Urination_FrequencyPX220801450600Renal and Urinary System Questions - How often:4N/A
PX220801_CCHS_RUSQ_Frequent_Urination_Last_EventPX220801450700Renal and Urinary System Questions - Last event4N/A
PX220801_CCHS_RUSQ_Frequent_Urination_Medical_AttentionPX220801450800Renal and Urinary System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RUSQ_Frequent_Urination_DiagnosisPX220801450900Renal and Urinary System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RUSQ_Urgency_To_UrinatePX220801460100Renal and Urinary System Questions - Have you had problems with urgency to urinate?4N/A
PX220801_CCHS_RUSQ_Urgency_To_Urinate_SeverityPX220801460200Renal and Urinary System Questions - How severe is this problem?4N/A
PX220801_CCHS_RUSQ_Urgency_To_Urinate_AgePX220801460300Renal and Urinary System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RUSQ_Urgency_To_Urinate_TimePX220801460400Renal and Urinary System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RUSQ_Urgency_To_Urinate_Associated_OtherPX220801460500Renal and Urinary System Questions - Is the urgency to urinate ever associated with other factor4N/A
PX220801_CCHS_RUSQ_Urgency_To_Urinate_FrequencyPX220801460600Renal and Urinary System Questions - How often:4N/A
PX220801_CCHS_RUSQ_Urgency_To_Urinate_Last_EventPX220801460700Renal and Urinary System Questions - Last event4N/A
PX220801_CCHS_RUSQ_Urgency_To_Urinate_Medical_AttentionPX220801460800Renal and Urinary System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RUSQ_Urgency_To_Urinate_DiagnosisPX220801460900Renal and Urinary System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RUSQ_Urinary_IncontinencePX220801470100Renal and Urinary System Questions - Have you had problems with urinary incontinence?4N/A
PX220801_CCHS_RUSQ_Urinary_Incontinence_SeverityPX220801470200Renal and Urinary System Questions - How severe is this problem?4N/A
PX220801_CCHS_RUSQ_Urinary_Incontinence_AgePX220801470300Renal and Urinary System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RUSQ_Urinary_Incontinence_TimePX220801470400Renal and Urinary System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RUSQ_Urinary_Incontinence_Associated_OtherPX220801470500Renal and Urinary System Questions - Is the urinary incontinence ever associated with other factor4N/A
PX220801_CCHS_RUSQ_Urinary_Incontinence_FrequencyPX220801470600Renal and Urinary System Questions - How often:4N/A
PX220801_CCHS_RUSQ_Urinary_Incontinence_Last_EventPX220801470700Renal and Urinary System Questions - Last event4N/A
PX220801_CCHS_RUSQ_Urinary_Incontinence_Medical_AttentionPX220801470800Renal and Urinary System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RUSQ_Urinary_Incontinence_DiagnosisPX220801470900Renal and Urinary System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RSQ_Loss_Of_LibidoPX220801480100Reproductive System Questions - - Have you had problems with loss of libido?4N/A
PX220801_CCHS_RSQ_Loss_Of_Libido_SeverityPX220801480200Reproductive System Questions - How severe is this problem?4N/A
PX220801_CCHS_RSQ_Loss_Of_Libido_AgePX220801480300Reproductive System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RSQ_Loss_Of_Libido_TimePX220801480400Reproductive System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RSQ_Loss_Of_Libido_Associated_OtherPX220801480500Reproductive System Questions - Is the loss of libido ever associated with other factor4N/A
PX220801_CCHS_RSQ_Loss_Of_Libido_FrequencyPX220801480600Reproductive System Questions - How often:4N/A
PX220801_CCHS_RSQ_Loss_Of_Libido_Last_EventPX220801480700Reproductive System Questions - Last event4N/A
PX220801_CCHS_RSQ_Loss_Of_Libido_Medical_AttentionPX220801480800Reproductive System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RSQ_Loss_Of_Libido_DiagnosisPX220801480900Reproductive System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RSQ_Problems_With_ErectionPX220801490100Reproductive System Questions - Have you had problems with erection?4N/A
PX220801_CCHS_RSQ_Problems_With_Erection_SeverityPX220801490200Reproductive System Questions - How severe is this problem?4N/A
PX220801_CCHS_RSQ_Problems_With_Erection_AgePX220801490300Reproductive System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RSQ_Problems_With_Erection_TimePX220801490400Reproductive System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RSQ_Problems_With_Erection_Associated_OtherPX220801490500Reproductive System Questions - Is the problems with erection ever associated with other factor4N/A
PX220801_CCHS_RSQ_Problems_With_Erection_FrequencyPX220801490600Reproductive System Questions - How often:4N/A
PX220801_CCHS_RSQ_Problems_With_Erection_Last_EventPX220801490700Reproductive System Questions - Last event4N/A
PX220801_CCHS_RSQ_Problems_With_Erection_Medical_AttentionPX220801490800Reproductive System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RSQ_Problems_With_Erection_DiagnosisPX220801490900Reproductive System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RSQ_Problems_With_PriapismPX220801500100Reproductive System Questions - Have you had problems with priapism?4N/A
PX220801_CCHS_RSQ_Problems_With_Priapism_SeverityPX220801500200Reproductive System Questions - How severe is this problem?4N/A
PX220801_CCHS_RSQ_Problems_With_Priapism_AgePX220801500300Reproductive System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RSQ_Problems_With_Priapism_TimePX220801500400Reproductive System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RSQ_Problems_With_Priapism_Associated_OtherPX220801500500Reproductive System Questions - Is the problems with priapism ever associated with other factor4N/A
PX220801_CCHS_RSQ_Problems_With_Priapism_FrequencyPX220801500600Reproductive System Questions - How often:4N/A
PX220801_CCHS_RSQ_Problems_With_Priapism_Last_EventPX220801500700Reproductive System Questions - Last event4N/A
PX220801_CCHS_RSQ_Problems_With_Priapism_Medical_AttentionPX220801500800Reproductive System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RSQ_Problems_With_Priapism_DiagnosisPX220801500900Reproductive System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RSQ_Problems_With_StridorPX220801510100Respiratory System Questions - Have you had problems with stridor?4N/A
PX220801_CCHS_RSQ_Problems_With_Stridor_SeverityPX220801510200Respiratory System Questions - How severe is this problem?4N/A
PX220801_CCHS_RSQ_Problems_With_Stridor_AgePX220801510300Respiratory System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RSQ_Problems_With_Stridor_TimePX220801510400Respiratory System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RSQ_Problems_With_Stridor_Associated_OtherPX220801510500Respiratory System Questions - Is the problems with stridor ever associated with other factor4N/A
PX220801_CCHS_RSQ_Problems_With_Stridor_FrequencyPX220801510600Respiratory System Questions - How often:4N/A
PX220801_CCHS_RSQ_Problems_With_Stridor_Last_EventPX220801510700Respiratory System Questions - Last event4N/A
PX220801_CCHS_RSQ_Problems_With_Stridor_Medical_AttentionPX220801510800Respiratory System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RSQ_Problems_With_Stridor_DiagnosisPX220801510900Respiratory System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RSQ_Problems_With_SighPX220801520100Respiratory System Questions - Do you notice or have you been told that you either sigh a lot or do not sigh at all?4N/A
PX220801_CCHS_RSQ_Problems_With_Sigh_SeverityPX220801520200Respiratory System Questions - How severe is this problem?4N/A
PX220801_CCHS_RSQ_Problems_With_Sigh_AgePX220801520300Respiratory System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RSQ_Problems_With_Sigh_TimePX220801520400Respiratory System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RSQ_Problems_With_Sigh_Associated_OtherPX220801520500Respiratory System Questions - Is the problems with sigh ever associated with other factor4N/A
PX220801_CCHS_RSQ_Problems_With_Sigh_FrequencyPX220801520600Respiratory System Questions - How often:4N/A
PX220801_CCHS_RSQ_Problems_With_Sigh_Last_EventPX220801520700Respiratory System Questions - Last event4N/A
PX220801_CCHS_RSQ_Problems_With_Sigh_Medical_AttentionPX220801520800Respiratory System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RSQ_Problems_With_Sigh_DiagnosisPX220801520900Respiratory System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RSQ_Problems_With_ApneaPX220801530100Respiratory System Questions - Have you ever had problems with apnea or an apparent life threatening event?4N/A
PX220801_CCHS_RSQ_Problems_With_Apnea_SeverityPX220801530200Respiratory System Questions - How severe is this problem?4N/A
PX220801_CCHS_RSQ_Problems_With_Apnea_AgePX220801530300Respiratory System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RSQ_Problems_With_Apnea_TimePX220801530400Respiratory System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RSQ_Problems_With_Apnea_Associated_OtherPX220801530500Respiratory System Questions - Is the problems with apnea ever associated with other factor4N/A
PX220801_CCHS_RSQ_Problems_With_Apnea_FrequencyPX220801530600Respiratory System Questions - How often:4N/A
PX220801_CCHS_RSQ_Problems_With_Apnea_Last_EventPX220801530700Respiratory System Questions - Last event4N/A
PX220801_CCHS_RSQ_Problems_With_Apnea_Medical_AttentionPX220801530800Respiratory System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RSQ_Problems_With_Apnea_DiagnosisPX220801530900Respiratory System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RSQ_Problems_With_Alveolar_HypoventilationPX220801540100Respiratory System Questions - Have you ever been given a diagnosis of alveolar hypoventilation?4N/A
PX220801_CCHS_RSQ_Problems_With_Alveolar_Hypoventilation_SeverityPX220801540200Respiratory System Questions - How severe is this problem?4N/A
PX220801_CCHS_RSQ_Problems_With_Alveolar_Hypoventilation_AgePX220801540300Respiratory System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RSQ_Problems_With_Alveolar_Hypoventilation_TimePX220801540400Respiratory System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RSQ_Problems_With_Alveolar_Hypoventilation_Associated_OtherPX220801540500Respiratory System Questions - Is the problems with alveolar hypoventilation ever associated with other factor4N/A
PX220801_CCHS_RSQ_Problems_With_Alveolar_Hypoventilation_FrequencyPX220801540600Respiratory System Questions - How often:4N/A
PX220801_CCHS_RSQ_Problems_With_Alveolar_Hypoventilation_Last_EventPX220801540700Respiratory System Questions - Last event4N/A
PX220801_CCHS_RSQ_Problems_With_Alveolar_Hypoventilation_Medical_AttentionPX220801540800Respiratory System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RSQ_Problems_With_Alveolar_Hypoventilation_DiagnosisPX220801540900Respiratory System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RSQ_Problems_With_Breath_Holding_SpellsPX220801550100Respiratory System Questions - Have you ever had problems with breath holding spells?4N/A
PX220801_CCHS_RSQ_Problems_With_Breath_Holding_Spells_SeverityPX220801550200Respiratory System Questions - How severe is this problem?4N/A
PX220801_CCHS_RSQ_Problems_With_Breath_Holding_Spells_AgePX220801550300Respiratory System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_RSQ_Problems_With_Breath_Holding_Spells_TimePX220801550400Respiratory System Questions - When do symptoms occur:4N/A
PX220801_CCHS_RSQ_Problems_With_Breath_Holding_Spells_Associated_OtherPX220801550500Respiratory System Questions - Is the problems with breath holding spells ever associated with other factor4N/A
PX220801_CCHS_RSQ_Problems_With_Breath_Holding_Spells_FrequencyPX220801550600Respiratory System Questions - How often:4N/A
PX220801_CCHS_RSQ_Problems_With_Breath_Holding_Spells_Last_EventPX220801550700Respiratory System Questions - Last event4N/A
PX220801_CCHS_RSQ_Problems_With_Breath_Holding_Spells_Medical_AttentionPX220801550800Respiratory System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_RSQ_Problems_With_Breath_Holding_Spells_DiagnosisPX220801550900Respiratory System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_RSQ_SIDS_DeathPX220801560100Respiratory System Questions - Has there ever been a SIDS death in your family?4N/A
PX220801_CCHS_RSQ_Home_MonitorPX220801570100Respiratory System Questions - Has anyone in the family been on a home monitor? As an infant, child, or adult?4N/A
PX220801_CCHS_SSQ_Problems_With_Difficulty_SweatingPX220801580100Sudomotor System Questions - Have you ever had problems with difficulty sweating?4N/A
PX220801_CCHS_SSQ_Problems_With_Difficulty_Sweating_SeverityPX220801580200Sudomotor System Questions - How severe is this problem?4N/A
PX220801_CCHS_SSQ_Problems_With_Difficulty_Sweating_AgePX220801580300Sudomotor System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_SSQ_Problems_With_Difficulty_Sweating_TimePX220801580400Sudomotor System Questions - When do symptoms occur:4N/A
PX220801_CCHS_SSQ_Problems_With_Difficulty_Sweating_Associated_OtherPX220801580500Sudomotor System Questions - Is the problems with difficulty sweating ever associated with other factor4N/A
PX220801_CCHS_SSQ_Problems_With_Difficulty_Sweating_FrequencyPX220801580600Sudomotor System Questions - How often:4N/A
PX220801_CCHS_SSQ_Problems_With_Difficulty_Sweating_Last_EventPX220801580700Sudomotor System Questions - Last event4N/A
PX220801_CCHS_SSQ_Problems_With_Difficulty_Sweating_Medical_AttentionPX220801580800Sudomotor System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_SSQ_Problems_With_Difficulty_Sweating_DiagnosisPX220801580900Sudomotor System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_Obstructive_Sleep_ApneaPX220801590100Additional Questions - Have any members of your family tree been diagnosed with Obstructive sleep apnea?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_AsthmaPX220801600100Additional Questions - Have any members of your family tree been diagnosed with Asthma?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_SnoringPX220801610100Additional Questions - Have any members of your family tree been diagnosed with Snoring?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_DepressionPX220801620100Additional Questions - Have any members of your family tree been diagnosed with Depression (any kind)?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_SeizurePX220801630100Additional Questions - Have any members of your family tree been diagnosed with Seizure?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_Multiple_SclerosisPX220801640100Additional Questions - Have any members of your family tree been diagnosed with Multiple Sclerosis?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_PrematurityPX220801650100Additional Questions - Have any members of your family tree been diagnosed with Prematurity?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_Down_SyndromePX220801660100Additional Questions - Have any members of your family tree been diagnosed with Down syndrome?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_Ulcerative_ColitisPX220801670100Additional Questions - Have any members of your family tree been diagnosed with Ulcerative colitis, Crohn¿¿¿s disease or Irritable bowel syndrome?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_Gastroesophageal_RefluxPX220801680100Additional Questions - Have any members of your family tree been diagnosed with Gastroesophageal reflux?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_StillbirthsPX220801690100Additional Questions - Have any members of your family tree been diagnosed with Stillbirths?4N/A
PX220801_CCHS_AQ_Family_Diagnosis_MensesPX220801700100Additional Questions - Have any members of your family tree been diagnosed with Issues related to menses?4N/A
PX220801_CCHS_GT_PHOX2B_Screening_TestPX220801710100Genetic Testing - PHOX2B Screening Test4N/A
PX220801_CCHS_GT_PHOX2B_Sequencing_TestPX220801720100Genetic Testing - PHOX2B Sequencing Test4N/A
PX220801_CCHS_GT_PHOX2B_MLPA_TestPX220801730100Genetic Testing - PHOX2B MLPA Test4N/A
PX220801_CCHS_POCT_Tidal_VolumePX220801740100Physiologic and other clinical testing - Tidal volume (pneumotachograph) measurement4N/A
PX220801_CCHS_POCT_Chest_Abdomen_MovementPX220801750100Physiologic and other clinical testing - Movement (respiratory inductance plethysmography) of the chest and abdomen4N/A
PX220801_CCHS_POCT_Respiratory_FrequencyePX220801760100Physiologic and other clinical testing - Respiratory frequency4N/A
PX220801_CCHS_POCT_Hemoglobin_SaturationPX220801770100Physiologic and other clinical testing - Hemoglobin saturation with visible pulse waveform and beat-to-beat measures4N/A
PX220801_CCHS_POCT_End_Tidal_Carbon_DioxidePX220801780100Physiologic and other clinical testing - End tidal carbon dioxide with visible breath-to-breath measures4N/A
PX220801_CCHS_POCT_ECGPX220801790100Physiologic and other clinical testing - ECG4N/A
PX220801_CCHS_POCT_Exogenous_Endogenous_Ventilatory_ChallengesPX220801800100Physiologic and other clinical testing - Exogenous and endogenous ventilatory challenges in response to hypoxemia and hypercarbia (awake and asleep)4N/A
PX220801_CCHS_POCT_72-hour_HolterPX220801810100Physiologic and other clinical testing - 72-hour Holter recording annually to evaluate for cardiac sinus pauses4N/A
PX220801_CCHS_POCT_Neurocognitive_TestingPX220801820100Physiologic and other clinical testing - Neurocognitive testing4N/A
PX220801_CCHS_POCT_Neural_Crest_TumorsPX220801830100Physiologic and other clinical testing - Evaluation for tumors of neural crest origin if PHOX2B genotype 20/28-20/33 or NPARM4N/A
PX220801_CCHS_POCT_Hirschsprung_DiseasePX220801840100Physiologic and other clinical testing - Evaluation for Hirschsprung disease4N/A
PX220801_CCHS_POCT_Autonomic_TestingPX220801850100Physiologic and other clinical testing - Age and symptom-specific autonomic testing4N/A
PX220801_CCHS_ANSQ_Family_HeightPX220801010000Autonomic Nervous System Questionnaire (ANSQ) - Are you or any other adults (18 years of age or older) in your family Over 6¿¿¿2 Or Under 4¿¿¿8?4N/A
PX220801_CCHS_ANSQ_Family_WeightPX220801020000Autonomic Nervous System Questionnaire (ANSQ) - Are you or any other adults (18 years of age or older) in your family Over 200 lbs or Under 90 lbs?4N/A
PX220801_CCHS_ANSQ_Family_Atypical_GrowthPX220801030000Autonomic Nervous System Questionnaire (ANSQ) - Have any minors (under 18 years of age) in your family had atypical growth patterns?4N/A
PX220801_CCHS_ANSQ_Family_Obesity_DiagnosisPX220801040000Autonomic Nervous System Questionnaire (ANSQ) - Have you or anyone in your family ever been diagnosed with obesity?4N/A
PX220801_CCHS_ANSQ_Family_Growth_Hormone_ProblemPX220801050000Autonomic Nervous System Questionnaire (ANSQ) - Do you or anyone in your family have growth hormone deficiency or excess?4N/A
PX220801_CCHS_ANSQ_Family_Significant_Medical_ProblemPX220801060000Autonomic Nervous System Questionnaire (ANSQ) - Do you or anyone in your family have any known significant medical problems?4N/A
PX220801_CCHS_ANSQ_Family_Unusual_Skin_PigmentationPX220801070000Autonomic Nervous System Questionnaire (ANSQ) - Any unusual skin color ¿¿¿ increase or decrease in pigmentation?4N/A
PX220801_CCHS_ANSQ_Family_Genetic_DiseasePX220801080000Autonomic Nervous System Questionnaire (ANSQ) - Are there any genetic disease that run in your family? Inborn errors?4N/A
PX220801_CCHS_ANSQ_Family_Parkinson_DiseasePX220801090000Autonomic Nervous System Questionnaire (ANSQ) - Any history of Parkinson¿¿¿s disease?4N/A
PX220801_CCHS_ANSQ_Family_StrabismusPX220801100000Autonomic Nervous System Questionnaire (ANSQ) - Have you ever had a wandering eye/told you have strabismus?4N/A
PX220801_CCHS_ANSQ_Family_Other_ProblemPX220801110000Autonomic Nervous System Questionnaire (ANSQ) - Other4N/A
PX220801_CCHS_CSQ_DizzinessPX220801120100Cardiovascular System Questions - Have you experienced episodes of dizziness in the past?4N/A
PX220801_CCHS_CSQ_Dizziness_SeverityPX220801120200Cardiovascular System Questions - How severe is this problem?4N/A
PX220801_CCHS_CSQ_Dizziness_FrequencyPX220801120300Cardiovascular System Questions - How often:4N/A
PX220801_CCHS_CSQ_Dizziness_AgePX220801120400Cardiovascular System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_CSQ_Dizziness_TimePX220801120500Cardiovascular System Questions - When do symptoms occur:4N/A
PX220801_CCHS_CSQ_Dizziness_Aggravating_FactorPX220801120600Cardiovascular System Questions - Are there ever any precipitating or aggravating factors:4N/A
PX220801_CCHS_CSQ_Dizziness_Associated_EventPX220801120700Cardiovascular System Questions - Is the dizziness ever associated with the following4N/A
PX220801_CCHS_CSQ_Dizziness_Last_EventPX220801120800Cardiovascular System Questions - Last event4N/A
PX220801_CCHS_CSQ_Dizziness_Medical_AttentionPX220801120900Cardiovascular System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_CSQ_Dizziness_DiagnosisPX220801121000Cardiovascular System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_CSQ_Blurred_VisionPX220801130100Cardiovascular System Questions - Have you experienced episodes of blurred vision or glare in the past?4N/A
PX220801_CCHS_CSQ_Blurred_Vision_SeverityPX220801130200Cardiovascular System Questions - How severe is this problem?4N/A
PX220801_CCHS_CSQ_Blurred_Vision_AgePX220801130300Cardiovascular System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_CSQ_Blurred_Vision_TimePX220801130400Cardiovascular System Questions - When do symptoms occur:4N/A
PX220801_CCHS_CSQ_Blurred_Vision_Associated_FactorPX220801130500Cardiovascular System Questions - Is the blurred vision ever associated with the following4N/A
PX220801_CCHS_CSQ_Blurred_Vision_FrequencyPX220801130600Cardiovascular System Questions - How often:4N/A
PX220801_CCHS_CSQ_Blurred_Vision_Last_EventPX220801130700Cardiovascular System Questions - Last event4N/A
PX220801_CCHS_CSQ_Blurred_Vision_Medical_AttentionPX220801130800Cardiovascular System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_CSQ_Blurred_Vision_DiagnosisPX220801130900Cardiovascular System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_CSQ_Loss_ConsciousnessPX220801140100Cardiovascular System Questions - Have you experienced episodes of loss of consciousness in the past?4N/A
PX220801_CCHS_CSQ_Loss_Consciousness_SeverityPX220801140200Cardiovascular System Questions - How severe is this problem?4N/A
PX220801_CCHS_CSQ_Loss_Consciousness_AgePX220801140300Cardiovascular System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_CSQ_Loss_Consciousness_TimePX220801140400Cardiovascular System Questions - When do symptoms occur:4N/A
PX220801_CCHS_CSQ_Loss_Consciousness_Associated_FactorPX220801140500Cardiovascular System Questions - Is the loss consciousness ever associated with the following4N/A
PX220801_CCHS_CSQ_Loss_Consciousness_FrequencyPX220801140600Cardiovascular System Questions - How often:4N/A
PX220801_CCHS_CSQ_Loss_Consciousness_Last_EventPX220801140700Cardiovascular System Questions - Last event4N/A
PX220801_CCHS_CSQ_Loss_Consciousness_Medical_AttentionPX220801140800Cardiovascular System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_CSQ_Loss_Consciousness_DiagnosisPX220801140900Cardiovascular System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_CSQ_HeadachePX220801150100Cardiovascular System Questions - Have you experienced throbbing pounding headaches (not migraine) in the past?4N/A
PX220801_CCHS_CSQ_Headache_SeverityPX220801150200Cardiovascular System Questions - How severe is this problem?4N/A
PX220801_CCHS_CSQ_Headache_Associated_FactorPX220801150300Cardiovascular System Questions - Is the headach ever associated with the following4N/A
PX220801_CCHS_CSQ_Headache_AgePX220801150400Cardiovascular System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_CSQ_Headache_TimePX220801150500Cardiovascular System Questions - When do symptoms occur:4N/A
PX220801_CCHS_CSQ_Headache_Associated_OtherPX220801150600Cardiovascular System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_CSQ_Headache_FrequencyPX220801150700Cardiovascular System Questions - How often:4N/A
PX220801_CCHS_CSQ_Headache_Last_EventPX220801150800Cardiovascular System Questions - Last event4N/A
PX220801_CCHS_CSQ_Headache_Medical_AttentionPX220801150900Cardiovascular System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_CSQ_Headache_DiagnosisPX220801151000Cardiovascular System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_CSQ_Facial_PallorPX220801160100Cardiovascular System Questions - Have you ever had facial pallor ¿¿¿ paleness of the face associated with sweating?4N/A
PX220801_CCHS_CSQ_Facial_Pallor_SeverityPX220801160200Cardiovascular System Questions - How severe is this problem?4N/A
PX220801_CCHS_CSQ_Facial_Pallor_AgePX220801160300Cardiovascular System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_CSQ_Facial_Pallor_TimePX220801160400Cardiovascular System Questions - When do symptoms occur:4N/A
PX220801_CCHS_CSQ_Facial_Pallor_Associated_FactorPX220801160500Cardiovascular System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_CSQ_Facial_Pallor_FrequencyPX220801160600Cardiovascular System Questions - How often:4N/A
PX220801_CCHS_CSQ_Facial_Pallor_Last_EventPX220801160700Cardiovascular System Questions - Last event4N/A
PX220801_CCHS_CSQ_Facial_Pallor_Medical_AttentionPX220801160800Cardiovascular System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_CSQ_Facial_Pallor_DiagnosisPX220801160900Cardiovascular System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_CSQ_Cold_Finger_ToePX220801170100Cardiovascular System Questions - Have you ever had really cold fingers or toes?4N/A
PX220801_CCHS_CSQ_Cold_Finger_Toe_SeverityPX220801170200Cardiovascular System Questions - How severe is this problem?4N/A
PX220801_CCHS_CSQ_Cold_Finger_Toe_AgePX220801170300Cardiovascular System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_CSQ_Cold_Finger_Toe_TimePX220801170400Cardiovascular System Questions - When do symptoms occur:4N/A
PX220801_CCHS_CSQ_Cold_Finger_Toe_Associated_FactorPX220801170500Cardiovascular System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_CSQ_Cold_Finger_Toe_FrequencyPX220801170600Cardiovascular System Questions - How often:4N/A
PX220801_CCHS_CSQ_Cold_Finger_Toe_Last_EventPX220801170700Cardiovascular System Questions - Last event4N/A
PX220801_CCHS_CSQ_Cold_Finger_Toe_Medical_AttentionPX220801170800Cardiovascular System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_CSQ_Cold_Finger_Toe_DiagnosisPX220801170900Cardiovascular System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_CSQ_Raynaud_PhenomenonPX220801180100Cardiovascular System Questions - Have you ever had Raynaud¿¿¿s phenomenon where your fingers go white, then blue and red?4N/A
PX220801_CCHS_CSQ_Raynaud_Phenomenon_SeverityPX220801180200Cardiovascular System Questions - How severe is this problem?4N/A
PX220801_CCHS_CSQ_Raynaud_Phenomenon_AgePX220801180300Cardiovascular System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_CSQ_Raynaud_Phenomenon_TimePX220801180400Cardiovascular System Questions - When do symptoms occur:4N/A
PX220801_CCHS_CSQ_Raynaud_Phenomenon_Associated_FactorPX220801180500Cardiovascular System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_CSQ_Raynaud_Phenomenon_FrequencyPX220801180600Cardiovascular System Questions - How often:4N/A
PX220801_CCHS_CSQ_Raynaud_Phenomenon_Last_EventPX220801180700Cardiovascular System Questions - Last event4N/A
PX220801_CCHS_CSQ_Raynaud_Phenomenon_Medical_AttentionPX220801180800Cardiovascular System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_CSQ_Raynaud_Phenomenon_DiagnosisPX220801180900Cardiovascular System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_CSQ_Doctor_DiagnosisPX220801190000Cardiovascular System Questions - Have you ever been told by a doctor that you have:4N/A
PX220801_CCHS_GSQ_Profuse_Oral_SecretionPX220801200100Gastrointestinal System Questions - Have you ever had profuse oral secretions/drooling?4N/A
PX220801_CCHS_GSQ_Profuse_Oral_Secretion_SeverityPX220801200200Gastrointestinal System Questions - How severe is this problem?4N/A
PX220801_CCHS_GSQ_Profuse_Oral_Secretion_AgePX220801200300Gastrointestinal System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_GSQ_Profuse_Oral_Secretion_TimePX220801200400Gastrointestinal System Questions - When do symptoms occur:4N/A
PX220801_CCHS_GSQ_Profuse_Oral_Secretion_Associated_FactorPX220801200500Gastrointestinal System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_GSQ_Profuse_Oral_Secretion_FrequencyPX220801200600Gastrointestinal System Questions - How often:4N/A
PX220801_CCHS_GSQ_Profuse_Oral_Secretion_Last_EventPX220801200700Gastrointestinal System Questions - Last event4N/A
PX220801_CCHS_GSQ_Profuse_Oral_Secretion_Medical_AttentionPX220801200800Gastrointestinal System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_GSQ_Dysphagia_Difficulty_SwallowingPX220801210100Gastrointestinal System Questions - Have you ever had dysphagia ¿¿¿ difficulty swallowing?4N/A
PX220801_CCHS_GSQ_Dysphagia_Difficulty_Swallowing_SeverityPX220801210200Gastrointestinal System Questions - How severe is this problem?4N/A
PX220801_CCHS_GSQ_Dysphagia_Difficulty_Swallowing_AgePX220801210300Gastrointestinal System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_GSQ_Dysphagia_Difficulty_Swallowing_TimePX220801210400Gastrointestinal System Questions - When do symptoms occur:4N/A
PX220801_CCHS_GSQ_Dysphagia_Difficulty_Swallowing_Associated_FactorPX220801210500Gastrointestinal System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_GSQ_Dysphagia_Difficulty_Swallowing_FrequencyPX220801210600Gastrointestinal System Questions - How often:4N/A
PX220801_CCHS_GSQ_Dysphagia_Difficulty_Swallowing_Last_EventPX220801210700Gastrointestinal System Questions - Last event4N/A
PX220801_CCHS_GSQ_Profuse_Oral_Secretion_DiagnosisPX220801210800Gastrointestinal System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_GSQ_Dysphagia_Difficulty_Swallowing_Medical_AttentionPX220801210800Gastrointestinal System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_GSQ_Dysphagia_Difficulty_Swallowing_DiagnosisPX220801210900Gastrointestinal System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_GSQ_AnorexiaPX220801220100Gastrointestinal System Questions - Have you ever had Anorexia?4N/A
PX220801_CCHS_GSQ_Anorexia_SeverityPX220801220200Gastrointestinal System Questions - How severe is this problem?4N/A
PX220801_CCHS_GSQ_Anorexia_AgePX220801220300Gastrointestinal System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_GSQ_Anorexia_TimePX220801220400Gastrointestinal System Questions - When do symptoms occur:4N/A
PX220801_CCHS_GSQ_Anorexia_Associated_FactorPX220801220500Gastrointestinal System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_GSQ_Anorexia_FrequencyPX220801220600Gastrointestinal System Questions - How often:4N/A
PX220801_CCHS_GSQ_Anorexia_Last_EventPX220801220700Gastrointestinal System Questions - Last event4N/A
PX220801_CCHS_GSQ_Anorexia_Medical_AttentionPX220801220800Gastrointestinal System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_GSQ_Anorexia_DiagnosisPX220801220900Gastrointestinal System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_GSQ_Early_SatietyPX220801230100Gastrointestinal System Questions - Have you ever had Early satiety?4N/A
PX220801_CCHS_GSQ_Early_Satiety_SeverityPX220801230200Gastrointestinal System Questions - How severe is this problem?4N/A
PX220801_CCHS_GSQ_Early_Satiety_AgePX220801230300Gastrointestinal System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_GSQ_Early_Satiety_TimePX220801230400Gastrointestinal System Questions - When do symptoms occur:4N/A
PX220801_CCHS_GSQ_Early_Satiety_Associated_FactorPX220801230500Gastrointestinal System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_GSQ_Early_Satiety_FrequencyPX220801230600Gastrointestinal System Questions - How often:4N/A
PX220801_CCHS_GSQ_Early_Satiety_Last_EventPX220801230700Gastrointestinal System Questions - Last event4N/A
PX220801_CCHS_GSQ_Early_Satiety_Medical_AttentionPX220801230800Gastrointestinal System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_GSQ_Early_Satiety_DiagnosisPX220801230900Gastrointestinal System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_GSQ_BloatingPX220801240100Gastrointestinal System Questions - Have you ever had Persistent sense of bloating/Fullness with abdominal distension?4N/A
PX220801_CCHS_GSQ_Bloating_SeverityPX220801240200Gastrointestinal System Questions - How severe is this problem?4N/A
PX220801_CCHS_GSQ_Bloating_AgePX220801240300Gastrointestinal System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_GSQ_Bloating_TimePX220801240400Gastrointestinal System Questions - When do symptoms occur:4N/A
PX220801_CCHS_GSQ_Bloating_Associated_FactorPX220801240500Gastrointestinal System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_GSQ_Bloating_FrequencyPX220801240600Gastrointestinal System Questions - How often:4N/A
PX220801_CCHS_GSQ_Bloating_Last_EventPX220801240700Gastrointestinal System Questions - Last event4N/A
PX220801_CCHS_GSQ_Bloating_Medical_AttentionPX220801240800Gastrointestinal System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_GSQ_Bloating_DiagnosisPX220801240900Gastrointestinal System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_GSQ_Frequent_NauseaPX220801250100Gastrointestinal System Questions - Have you ever had Frequent nausea?4N/A
PX220801_CCHS_GSQ_Frequent_Nausea_SeverityPX220801250200Gastrointestinal System Questions - How severe is this problem?4N/A
PX220801_CCHS_GSQ_Frequent_Nausea_AgePX220801250300Gastrointestinal System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_GSQ_Frequent_Nausea_TimePX220801250400Gastrointestinal System Questions - When do symptoms occur:4N/A
PX220801_CCHS_GSQ_Frequent_Nausea_Associated_FactorPX220801250500Gastrointestinal System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_GSQ_Frequent_Nausea_FrequencyPX220801250600Gastrointestinal System Questions - How often:4N/A
PX220801_CCHS_GSQ_Frequent_Nausea_Last_EventPX220801250700Gastrointestinal System Questions - Last event4N/A
PX220801_CCHS_GSQ_Frequent_Nausea_Medical_AttentionPX220801250800Gastrointestinal System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_GSQ_Frequent_Nausea_DiagnosisPX220801250900Gastrointestinal System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_GSQ_Recurrent_VomitingPX220801260100Gastrointestinal System Questions - Have you ever had Recurrent vomiting?4N/A
PX220801_CCHS_GSQ_Recurrent_Vomiting_SeverityPX220801260200Gastrointestinal System Questions - How severe is this problem?4N/A
PX220801_CCHS_GSQ_Recurrent_Vomiting_AgePX220801260300Gastrointestinal System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_GSQ_Recurrent_Vomiting_TimePX220801260400Gastrointestinal System Questions - When do symptoms occur:4N/A
PX220801_CCHS_GSQ_Recurrent_Vomiting_Associated_FactorPX220801260500Gastrointestinal System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_GSQ_Recurrent_Vomiting_FrequencyPX220801260600Gastrointestinal System Questions - How often:4N/A
PX220801_CCHS_GSQ_Recurrent_Vomiting_Last_EventPX220801260700Gastrointestinal System Questions - Last event4N/A
PX220801_CCHS_GSQ_Recurrent_Vomiting_Medical_AttentionPX220801260800Gastrointestinal System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_GSQ_Recurrent_Vomiting_DiagnosisPX220801260900Gastrointestinal System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_GSQ_Abdominal_SurgeryPX220801270100Gastrointestinal System Questions - Have you ever had abdominal surgery?4N/A
PX220801_CCHS_GSQ_Abdominal_Surgery_ScarPX220801270200Gastrointestinal System Questions - Have you ever had abdominal surgery? Do you have any scars on your body?4N/A
PX220801_CCHS_GSQ_Abdominal_Surgery_DatePX220801270300Gastrointestinal System Questions - date of abdominal surgery4N/A
PX220801_CCHS_GSQ_Abdominal_Surgery_ReasonPX220801270400Gastrointestinal System Questions - reason of abdominal surgery4N/A
PX220801_CCHS_GSQ_Hirschsprung_Disease_DiagnosisPX220801280100Gastrointestinal System Questions - Have you ever been diagnosed or evaluated for Hirschsprung disease?4N/A
PX220801_CCHS_GSQ_Severe_ConstipationPX220801290100Gastrointestinal System Questions - Have you ever had had constipation defined as inability to defecate without strenuous effort, presence of hard stools, bowel movements twice a week on average, regular use of mineral oil or other mild laxative?4N/A
PX220801_CCHS_GSQ_Severe_Constipation_SeverityPX220801290200Gastrointestinal System Questions - How severe is this problem?4N/A
PX220801_CCHS_GSQ_Severe_Constipation_AgePX220801290300Gastrointestinal System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_GSQ_Severe_Constipation_TimePX220801290400Gastrointestinal System Questions - When do symptoms occur:4N/A
PX220801_CCHS_GSQ_Severe_Constipation_Associated_FactorPX220801290500Gastrointestinal System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_GSQ_Severe_Constipation_FrequencyPX220801290600Gastrointestinal System Questions - How often:4N/A
PX220801_CCHS_GSQ_Severe_Constipation_Last_EventPX220801290700Gastrointestinal System Questions - Last event4N/A
PX220801_CCHS_GSQ_Severe_Constipation_Medical_AttentionPX220801290800Gastrointestinal System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_GSQ_Severe_Constipation_DiagnosisPX220801290900Gastrointestinal System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_GSQ_Autonomic_DiarrheaPX220801300100Gastrointestinal System Questions - Have you ever had (autonomic) diarrhea unrelated to a viral illness?4N/A
PX220801_CCHS_GSQ_Autonomic_Diarrhea_SeverityPX220801300200Gastrointestinal System Questions - How severe is this problem?4N/A
PX220801_CCHS_GSQ_Autonomic_Diarrhea_AgePX220801300300Gastrointestinal System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_GSQ_Autonomic_Diarrhea_TimePX220801300400Gastrointestinal System Questions - When do symptoms occur:4N/A
PX220801_CCHS_GSQ_Autonomic_Diarrhea_Associated_FactorPX220801300500Gastrointestinal System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_GSQ_Autonomic_Diarrhea_FrequencyPX220801300600Gastrointestinal System Questions - How often:4N/A
PX220801_CCHS_GSQ_Autonomic_Diarrhea_Last_EventPX220801300700Gastrointestinal System Questions - Last event4N/A
PX220801_CCHS_GSQ_Autonomic_Diarrhea_Medical_AttentionPX220801300800Gastrointestinal System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_GSQ_Autonomic_Diarrhea_DiagnosisPX220801300900Gastrointestinal System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_GSQ_Abdominal_PainPX220801310100Gastrointestinal System Questions - Have you ever had abdominal pain? Have you experienced colic as an infant?4N/A
PX220801_CCHS_GSQ_Abdominal_Pain_SeverityPX220801310200Gastrointestinal System Questions - How severe is this problem?4N/A
PX220801_CCHS_GSQ_Abdominal_Pain_AgePX220801310300Gastrointestinal System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_GSQ_Abdominal_Pain_TimePX220801310400Gastrointestinal System Questions - When do symptoms occur:4N/A
PX220801_CCHS_GSQ_Abdominal_Pain_Associated_FactorPX220801310500Gastrointestinal System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_GSQ_Abdominal_Pain_FrequencyPX220801310600Gastrointestinal System Questions - How often:4N/A
PX220801_CCHS_GSQ_Abdominal_Pain_Last_EventPX220801310700Gastrointestinal System Questions - Last event4N/A
PX220801_CCHS_GSQ_Abdominal_Pain_Medical_AttentionPX220801310800Gastrointestinal System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_GSQ_Abdominal_Pain_DiagnosisPX220801310900Gastrointestinal System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_NSQ_MigrainePX220801320100Neurologic System Questions - Have you ever had migraine or cluster headaches?4N/A
PX220801_CCHS_NSQ_Migraine_SeverityPX220801320200Neurologic System Questions - How severe is this problem?4N/A
PX220801_CCHS_NSQ_Migraine_AgePX220801320300Neurologic System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_NSQ_Migraine_TimePX220801320400Neurologic System Questions - When do symptoms occur:4N/A
PX220801_CCHS_NSQ_Migraine_Associated_FactorPX220801320500Neurologic System Questions - Is the migraine ever associated with the following4N/A
PX220801_CCHS_NSQ_Migraine_FrequencyPX220801320600Neurologic System Questions - How often:4N/A
PX220801_CCHS_NSQ_Migraine_Last_EventPX220801320700Neurologic System Questions - Last event4N/A
PX220801_CCHS_NSQ_Migraine_Medical_AttentionPX220801320800Neurologic System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_NSQ_Migraine_DiagnosisPX220801320900Neurologic System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_NSQ_Decreased_Limb_Muscle_TonePX220801330100Neurologic System Questions - Have you ever been told you had decreased muscle tone in your arms or legs?4N/A
PX220801_CCHS_NSQ_Severe_Burning_PainPX220801330100Neurologic System Questions - Have you ever had severe burning pain or causalgia of any body part? (For example ¿¿¿ ears, fingers, toes, etc)4N/A
PX220801_CCHS_NSQ_Decreased_Limb_Muscle_Tone_SeverityPX220801330200Neurologic System Questions - How severe is this problem?4N/A
PX220801_CCHS_NSQ_Severe_Burning_Pain_SeverityPX220801330200Neurologic System Questions - How severe is this problem?4N/A
PX220801_CCHS_NSQ_Decreased_Limb_Muscle_Tone_AgePX220801330300Neurologic System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_NSQ_Severe_Burning_Pain_AgePX220801330300Neurologic System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_NSQ_Decreased_Limb_Muscle_Tone_TimePX220801330400Neurologic System Questions - When do symptoms occur:4N/A
PX220801_CCHS_NSQ_Severe_Burning_Pain_TimePX220801330400Neurologic System Questions - When do symptoms occur:4N/A
PX220801_CCHS_NSQ_Decreased_Limb_Muscle_Tone_Associated_FactorPX220801330500Neurologic System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_NSQ_Severe_Burning_Pain_Associated_FactorPX220801330500Neurologic System Questions - Associated with any other symptoms4N/A
PX220801_CCHS_NSQ_Decreased_Limb_Muscle_Tone_FrequencyPX220801330600Neurologic System Questions - How often:4N/A
PX220801_CCHS_NSQ_Severe_Burning_Pain_FrequencyPX220801330600Neurologic System Questions - How often:4N/A
PX220801_CCHS_NSQ_Decreased_Limb_Muscle_Tone_Last_EventPX220801330700Neurologic System Questions - Last event4N/A
PX220801_CCHS_NSQ_Severe_Burning_Pain_Last_EventPX220801330700Neurologic System Questions - Last event4N/A
PX220801_CCHS_NSQ_Decreased_Limb_Muscle_Tone_Medical_AttentionPX220801330800Neurologic System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_NSQ_Severe_Burning_Pain_Medical_AttentionPX220801330800Neurologic System Questions - Did you seek medical attention for these events?4N/A
PX220801_CCHS_NSQ_Decreased_Limb_Muscle_Tone_DiagnosisPX220801330900Neurologic System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_NSQ_Severe_Burning_Pain_DiagnosisPX220801330900Neurologic System Questions - If yes, was a diagnosis made?4N/A
PX220801_CCHS_NSQ_Altered_Pain_PerceptionPX220801340200Neurologic System Questions - Have you ever had an altered perception of pain¿¿¿either a high pain tolerance/not feel pain or a low pain tolerance/very sensitive to pain?4N/A
PX220801_CCHS_NSQ_Altered_Pain_Perception_SeverityPX220801340300Neurologic System Questions - How severe is this problem?4N/A
PX220801_CCHS_NSQ_Altered_Pain_Perception_AgePX220801340400Neurologic System Questions - Age at onset of symptoms4N/A
PX220801_CCHS_NSQ_Altered_Pain_Perception_TimePX220801340500Neurologic System Questions - When do symptoms occur:4N/A
PX220801_CCHS_NSQ_Altered_Pain_Perception_Associated_FactorPX220801340600Neurologic System Questions - Associated with any other symptoms4N/A