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Protocol - Personal and Family History of Autoimmune and Inflammatory Disorders

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Protocol Name from Source:

The Expert Review Panel has not reviewed this measure yet.

Availability:

Publicly available

Description:

This protocol includes self-administered questions from the Lupus Family Registry and Repository (LFRR). Respondents answer questions regarding their personal history and family history of various autoimmune and inflammatory disorders.

Protocol:

For each of the following conditions, indicate whether you have ever had the condition or if a doctor has told you that you have the condition. Mark only one response for each. If the condition is still present, mark P (Present). If it has been a problem but is no longer a problem, mark Y (Yes). Otherwise, mark N (Never).

Condition

P

Y

N

Prominent rash on cheeks for more than 1 month

[ ] [ ] [ ]

Skin breaks out in the sun (not sunburn)

[ ] [ ] [ ]

Sores in mouth for more than 2 weeks

[ ] [ ] [ ]

Arthritis or rheumatism for more than 3 months

[ ] [ ] [ ]

Pain for more than a few days when taking deep breath (pleurisy)

[ ] [ ] [ ]

Protein in urine

[ ] [ ] [ ]

Low blood counts (anemia, low white blood cell count, or low platelet count)

[ ] [ ] [ ]
If yes or still present Anemia

Hemolytic anemia

Low white blood cell count

Low platelet count

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

Idiopathic thrombocytopenia purpura (ITP)

[ ] [ ] [ ]

Bruise easily

[ ] [ ] [ ]

Positive skin test for tuberculosis (tuberculin, PPD, or TINE test)

[ ] [ ] [ ]

Positive blood test for syphilis (VDRL or RPR)

[ ] [ ] [ ]

Seizure, convulsion, or fit

[ ] [ ] [ ]

Mental illness (requiring hospital admission) or psychosis or hallucinations

[ ] [ ] [ ]

Rapid hair loss NOT due to chemotherapy

[ ] [ ] [ ]

Mononucleosis (mono)

[ ] [ ] [ ]

If yes or still present, age you first had mono

[ ] 0-12 [ ] 13-19 [ ] 20+

Condition

P

Y

N

Chronic fatigue

[ ] [ ] [ ]

Psoriasis

[ ] [ ] [ ]

Scleroderma

[ ] [ ] [ ]

Vitiligo

[ ] [ ] [ ]

Fever blisters on lips

[ ] [ ] [ ]

Poison ivy

[ ] [ ] [ ]

Athlete's foot

[ ] [ ] [ ]

Fibromyalgia

[ ] [ ] [ ]

Arthritis

[ ] [ ] [ ]

Osteoarthritis

[ ] [ ] [ ]

Bunions

[ ] [ ] [ ]

Myasthenia gravis

[ ] [ ] [ ]

Slow heart beat (less than 50 beats per minute)

[ ] [ ] [ ]

Recurrent chest pain

[ ] [ ] [ ]

Heart attack

[ ] [ ] [ ]

Asthma

[ ] [ ] [ ]

Recurrent heart burn

[ ] [ ] [ ]

Ulcer (stomach or duodenal)

[ ] [ ] [ ]

Recurrent diarrhea

[ ] [ ] [ ]

Hemorrhoids (piles)

[ ] [ ] [ ]

Jaundice

[ ] [ ] [ ]

Appendicitis

[ ] [ ] [ ]

Cancer

[ ] [ ] [ ]

Kidney stones

[ ] [ ] [ ]

Recurrent urinary tract infections

[ ] [ ] [ ]

Condition

P

Y

N

Recurrent vaginitis

[ ] [ ] [ ]

Depression

[ ] [ ] [ ]

Chronic headaches

[ ] [ ] [ ]

Anxiety or panic disorder

[ ] [ ] [ ]

Carpal tunnel syndrome

[ ] [ ] [ ]

Anemia

[ ] [ ] [ ]

Pernicious anemia

[ ] [ ] [ ]

Diabetes

[ ] [ ] [ ]

Thyroid problems

[ ] [ ] [ ]

Infertility

[ ] [ ] [ ]

Multiple miscarriages

[ ] [ ] [ ]

High blood pressure

[ ] [ ] [ ]

Phlebitis

[ ] [ ] [ ]

Pulmonary embolus

[ ] [ ] [ ]

Stroke

[ ] [ ] [ ]

Blood clot

[ ] [ ] [ ]

Sjögren's syndrome

[ ] [ ] [ ]

Dry eyes

[ ] [ ] [ ]

Dry mouth

[ ] [ ] [ ]

False teeth

[ ] [ ] [ ]

Seasonal allergies (or hay fever)

[ ] [ ] [ ]

Sinus problems

[ ] [ ] [ ]

Graying of all or nearly all hair before 35

[ ] [ ] [ ]

Baldness

[ ] [ ] [ ]

Varicose veins

[ ] [ ] [ ]

Breast implants

[ ] [ ] [ ]

Spleen removed

[ ] [ ] [ ]

List your family's history of the following diseases. For example, the first row would indicate that you have a history of rheumatoid arthritis. The second row would indicate that Jane Doe, your grandmother on your father's side, has a history of type 2 diabetes. Use the back of this page if you need more space.

Diseases

1

Systemic lupus erythematosus (SLE)

2

Rheumatoid arthritis

3

Sjögren's syndrome

4

Discoid lupus

5

Autoimmune thyroid disease (AITD)

6

Type 1 diabetes (Juvenile onset)

7

Type 2 diabetes (Adult onset)

8

Myasthenia gravis

9

Scleroderma

10

Addison's disease

11

Idiopathic thrombocytopenia (ITP)

12

Antiphospholipid syndrome

13

Graying of all hair before age 35

14

Other autoimmune disorder

Relationships

1

Self

2

Full sibling

3

Half sibling

4

Child

5

Grandchild

Mother's Side

Father's Side

6

Mother

7

Mother

8

Aunt

9

Aunt

10

Uncle

11

Uncle

12

Cousin

13

Cousin

14

Grandmother

15

Grandmother

16

Grandfather

17

Grandfather

18

Other

19

Other

Disease

Relationship

Name of Relative (if not self)

2

1

7

15

JANE DOE

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___ ___

___ ___

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___ ___

___ ___

___ ___

___ ___

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___ ___

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___ ___

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Personnel and Training Required

None

Equipment Needs

None

Requirements

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

Mode of Administration

Self-administered

Life Stage:

Adult

Specific Instructions:

The Infectious Diseases and Immunity Working Group notes that this instrument captures numerous symptoms and signs that are not highly characteristic of or peculiar to autoimmunity. In addition, certain conditions considered autoimmune may not be included, such as celiac disease and multiple sclerosis.

Research Domain Information

Release Date:

November 12, 2010

Definition

This measure is a symptom, disease, and condition checklist to assess a respondent's personal and family history of autoimmune and inflammatory disorders.

Purpose

This measure can be used to determine the personal and family history of lupus, rheumatoid arthritis, and selected other autoimmune diseases.

Selection Rationale

This protocol is a widely used and validated instrument for eliciting the history and manifestations of autoimmune disorders.

Language

English, Spanish

Standards

StandardNameIDSource
Common Data Elements (CDE)Immunology Autoimmune Disease Family Medical History Assessment Description Text3151170CDE Browser
Common Data Elements (CDE)Immunology Autoimmune Disease Personal Medical History Assessment Description Text3151168CDE Browser
Common Data Elements (CDE)Immunology Inflammatory Disease Family Medical History Assessment Description Text3151171CDE Browser
Common Data Elements (CDE)Immunology Inflammatory Disease Personal Medical History Assessment Description Text3151169CDE Browser
Logical Observation Identifiers Names and Codes (LOINC)Pers fam hx autoimm inflamm proto62892-5LOINC

Process and Review

The Expert Review Panel has not reviewed this measure yet.

Source

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). (2007). Lupus Family Registry and Repository (LFRR) Questionnaire—SLE. Pages 9–11.

General References

none

Protocol ID:

161401

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX161401_Prominent_Rash_On_CheeksPX161401010000Prominent rash on cheeks for more than 1 month4N/A
PX161401_Skin_BreaksOut_In_SunPX161401020000Skin breaks out in the sun (not sunburn)4N/A
PX161401_Mouth_SoresPX161401030000Sores in mouth for more than 2 weeks4N/A
PX161401_Arthritis_More_Than_3_MonthsPX161401040000Arthritis or rheumatism for more than 3 months4N/A
PX161401_PleurisyPX161401050000Pain for more than a few days when taking deep breath (pleurisy)4N/A
PX161401_Protein_In_UrinePX161401060000Protein in urine4N/A
PX161401_Low_Blood_CountsPX161401070000Low blood counts (anemia, low white blood cell count, or low platelet count)4N/A
PX161401_LBC_AnemiaPX161401080100If yes or still present Anemia4N/A
PX161401_Low_White_Blood_Cell_CountPX161401080300If yes or still present Low white blood cell count4N/A
PX161401_Low_Platelet_CountPX161401080400Low platelet count4N/A
PX161401_Idiopathic_Thrombocytopenia_PurpuraPX161401090000Idiopathic thrombocytopenia purpura (ITP)4N/A
PX161401_BruisePX161401100000Bruise easily4N/A
PX161401_Positive_Tuberculosis_Skin_TestPX161401110000Positive skin test for tuberculosis (tuberculin, PPD, or TINE test)4N/A
PX161401_Positive_Syphilis_Blood_TestPX161401120000Positive blood test for syphilis (VDRL or RPR)4N/A
PX161401_SeizurePX161401130000Seizure, convulsion, or fit4N/A
PX161401_Mental_IllnessPX161401140000Mental illness (requiring hospital admission) or psychosis or hallucinations4N/A
PX161401_Rapid_Hair_LossPX161401150000Rapid hair loss NOT due to chemotherapy4N/A
PX161401_MononucleosisPX161401160000Mononucleosis (mono)4N/A
PX161401_Age_First_Had_MononucleosisPX161401160100If yes or still present, age you first had mono4N/A
PX161401_Chronic_FatiguePX161401170000Chronic fatigue4N/A
PX161401_PsoriasisPX161401180000Psoriasis4N/A
PX161401_SclerodermaPX161401190000Scleroderma4N/A
PX161401_VitiligoPX161401200000Vitiligo4N/A
PX161401_Fever_Blisters_On_LipsPX161401210000Fever blisters on lips4N/A
PX161401_Poison_IvyPX161401220000Poison ivy4N/A
PX161401_Athletes_FootPX161401230000Athlete's foot4N/A
PX161401_FibromyalgiaPX161401240000Fibromyalgia4N/A
PX161401_ArthritisPX161401250000Arthritis4Variable Mapping
PX161401_OsteoarthritisPX161401260000Osteoarthritis4N/A
PX161401_BunionsPX161401270000Bunions4N/A
PX161401_Myasthenia_GravisPX161401280000Myasthenia gravis4N/A
PX161401_Slow_Heart_BeatPX161401290000Slow heart beat (less than 50 beats per minute)4N/A
PX161401_Recurrent_Chest_PainPX161401300000Recurrent chest pain4N/A
PX161401_Heart_AttackPX161401310000Heart attack4N/A
PX161401_AsthmaPX161401320000Asthma4Variable Mapping
PX161401_Recurrent_Heart_BurnPX161401330000Recurrent heart burn4N/A
PX161401_UlcerPX161401340000Ulcer (stomach or duodenal)4N/A
PX161401_Recurrent_DiarrheaPX161401350000Recurrent diarrhea4N/A
PX161401_HemorrhoidsPX161401360000Hemorrhoids (piles)4N/A
PX161401_JaundicePX161401370000Jaundice4N/A
PX161401_AppendicitisPX161401380000Appendicitis4N/A
PX161401_LBC_Hemolytic_AnemiaPX161401080200If yes or still present Hemolytic anemia4N/A
PX161401_CancerPX161401390000Cancer4Variable Mapping
PX161401_Kidney_StonesPX161401400000Kidney stones4N/A
PX161401_Recurrent_Urinary_Tract_InfectionsPX161401410000Recurrent urinary tract infections4N/A
PX161401_Recurrent_VaginitisPX161401420000Recurrent vaginitis4N/A
PX161401_DepressionPX161401430000Depression4N/A
PX161401_Chronic_HeadachesPX161401440000Chronic headaches4N/A
PX161401_AnxietyPX161401450000Anxiety or panic disorder4N/A
PX161401_Carpal_Tunnel_SyndromePX161401460000Carpal tunnel syndrome4N/A
PX161401_AnemiaPX161401470000Anemia4N/A
PX161401_Pernicious_AnemiaPX161401480000Pernicious anemia4N/A
PX161401_DiabetesPX161401490000Diabetes4N/A
PX161401_Thyroid problemsPX161401500000Thyroid problems4N/A
PX161401_InfertilityPX161401510000Infertility4N/A
PX161401_Multiple_MiscarriagesPX161401520000Multiple miscarriages4N/A
PX161401_High_Blood_PressurePX161401530000High blood pressure4N/A
PX161401_PhlebitisPX161401540000Phlebitis4N/A
PX161401_Pulmonary_EmbolusPX161401550000Pulmonary embolus4N/A
PX161401_StrokePX161401560000Stroke4N/A
PX161401_Blood_ClotPX161401570000Blood clot4N/A
PX161401_Sjogrens_SyndromePX161401580000Sjogren's syndrome4N/A
PX161401_Dry_EyesPX161401590000Dry eyes4N/A
PX161401_Dry_MouthPX161401600000Dry mouth4N/A
PX161401_False_TeethPX161401610000False teeth4N/A
PX161401_Seasonal_AllergiesPX161401620000Seasonal allergies (or hay fever)4N/A
PX161401_Sinus_ProblemsPX161401630000Sinus problems4N/A
PX161401_Graying_Hair_Before_35PX161401640000Graying of all or nearly all hair before 354N/A
PX161401_BaldnessPX161401650000Baldness4N/A
PX161401_Varicose_VeinsPX161401660000Varicose veins4N/A
PX161401_Breast_ImplantsPX161401670000Breast implants4N/A
PX161401_Spleen_RemovedPX161401680000Spleen removed4N/A
PX161401_Family_History_1_DiseasePX161401690100Family History 1 - Disease4N/A
PX161401_Family_History_1_RelationshipsPX161401690200Family History 1 - Relationships4N/A
PX161401_Family_History_1_NamePX161401690300Name of Relative (if not self)4N/A
PX161401_Family_History_2_DiseasePX161401700100Family History 2 - Disease4N/A
PX161401_Family_History_2_RelationshipsPX161401700200Family History 2 - Relationships4N/A
PX161401_Family_History_2_NamePX161401700300Name of Relative (if not self)4N/A
PX161401_Family_History_3_DiseasePX161401710100Family History 3 - Disease4N/A
PX161401_Family_History_3_RelationshipsPX161401710200Family History 3- Relationships4N/A
PX161401_Family_History_3_NamePX161401710300Name of Relative (if not self)4N/A
PX161401_Family_History_4_DiseasePX161401720100Family History 4 - Disease4N/A
PX161401_Family_History_4_RelationshipsPX161401720200Family History 4- Relationships4N/A
PX161401_Family_History_4_NamePX161401720300Name of Relative (if not self)4N/A
PX161401_Family_History_5_DiseasePX161401730100Family History 5 - Disease4N/A
PX161401_Family_History_5_RelationshipsPX161401730200Family History 5- Relationships4N/A
PX161401_Family_History_5_NamePX161401730300Name of Relative (if not self)4N/A
PX161401_Family_History_6_DiseasePX161401740100Family History 6 - Disease4N/A
PX161401_Family_History_6_RelationshipsPX161401740200Family History 6- Relationships4N/A
PX161401_Family_History_6_NamePX161401740300Name of Relative (if not self)4N/A
PX161401_Family_History_7_DiseasePX161401750100Family History 7 - Disease4N/A
PX161401_Family_History_7_RelationshipsPX161401750200Family History 7- Relationships4N/A
PX161401_Family_History_7_NamePX161401750300Name of Relative (if not self)4N/A
PX161401_Family_History_8_DiseasePX161401760100Family History 8 - Disease4N/A
PX161401_Family_History_8_RelationshipsPX161401760200Family History 8- Relationships4N/A
PX161401_Family_History_8_NamePX161401760300Name of Relative (if not self)4N/A
PX161401_Family_History_9_DiseasePX161401770100Family History 9 - Disease4N/A
PX161401_Family_History_9_RelationshipsPX161401770200Family History 9- Relationships4N/A
PX161401_Family_History_9_NamePX161401770300Name of Relative (if not self)4N/A
PX161401_Family_History_10_DiseasePX161401780100Family History 10 - Disease4N/A
PX161401_Family_History_10_RelationshipsPX161401780200Family History 10- Relationships4N/A
PX161401_Family_History_10_NamePX161401780300Name of Relative (if not self)4N/A
PX161401_Family_History_11_DiseasePX161401790100Family History 11 - Disease4N/A
PX161401_Family_History_11_RelationshipsPX161401790200Family History 11- Relationships4N/A
PX161401_Family_History_11_NamePX161401790300Name of Relative (if not self)4N/A
PX161401_Family_History_12_DiseasePX161401800100Family History 12 - Disease4N/A
PX161401_Family_History_12_RelationshipsPX161401800200Family History 12- Relationships4N/A
PX161401_Family_History_12_NamePX161401800300Name of Relative (if not self)4N/A
PX161401_Family_History_13_DiseasePX161401810100Family History 13 - Disease4N/A
PX161401_Family_History_13_RelationshipsPX161401810200Family History 13- Relationships4N/A
PX161401_Family_History_13_NamePX161401810300Name of Relative (if not self)4N/A
PX161401_Family_History_14_DiseasePX161401820100Family History 14 - Disease4N/A
PX161401_Family_History_14_RelationshipsPX161401820200Family History 14- Relationships4N/A
PX161401_Family_History_14_NamePX161401820300Name of Relative (if not self)4N/A
PX161401_Family_History_15_DiseasePX161401830100Family History 15 - Disease4N/A
PX161401_Family_History_15_RelationshipsPX161401830200Family History 15- Relationships4N/A
PX161401_Family_History_15_NamePX161401830300Name of Relative (if not self)4N/A
PX161401_Family_History_16_DiseasePX161401840100Family History 16 - Disease4N/A
PX161401_Family_History_16_RelationshipsPX161401840200Family History 16- Relationships4N/A
PX161401_Family_History_16_NamePX161401840300Name of Relative (if not self)4N/A
PX161401_Family_History_17_DiseasePX161401850100Family History 17 - Disease4N/A
PX161401_Family_History_17_RelationshipsPX161401850200Family History 17- Relationships4N/A
PX161401_Family_History_17_NamePX161401850300Name of Relative (if not self)4N/A