Loading…

Protocol - Personal and Family History of Strabismus

Add to Toolkit

Protocol Name from Source:

The Expert Review Panel has not reviewed this measure yet.

Availability:

Publicly available

Description:

A series of self-administered questions to assess family and personal history of strabismus, including history of treatments and surgeries.

Protocol:

1. Have you ever had a crossed or wandering eye (amblyopia)?

[ ] yes

[ ] no

[ ] I'm not sure

2. Have you ever had double vision?

[ ] yes

[ ] no

[ ] I'm not sure

3. Do you ever tilt your head when looking straight?

[ ] yes

[ ] no

[ ] I'm not sure

4. Have you ever undergone eye muscle surgery?

[ ] yes

[ ] no

[ ] I'm not sure

5. Have you ever worn a patch or used eye drops (atropine penalization) for eye correction?

[ ] yes

[ ] no

[ ] I'm not sure

6. Have you ever worn glasses or contacts?

[ ] yes

[ ] no

[ ] I'm not sure

7. If you answered YES to any of the above questions (questions 1-6), please provide further details (i.e. age of onset of eye condition, dates of surgery, name of procedure if known, reason for glasses, etc.) _______________

8. Do you have a coloboma? (Absence or defect of ocular tissue ranging from a small pit in the optic disk to extensive defects in the iris, ciliary body, choroid, retina, or optic disk)

[ ] yes

[ ] no

[ ] I'm not sure

9. Do you have microphthalmia? (Abnormally small eye)

[ ] yes

[ ] no

[ ] I'm not sure

10. Do you have epibulbar dermoids? (Eye tumors that are not recurrent or progressive)

[ ] yes

[ ] no

[ ] I'm not sure

11. Do you have any abnormal ocular features? (eg. epicanthal folds-tissue overlapping the nasal corner of the eye, telecanthus- increased distance between the inner corners of the eyes, slanting of the palpebral fissure(s)-opening for the eyes between the eyelids?)

[ ] yes

[ ] no

[ ] I'm not sure

12. Do you have any retinal defects? (retinal tears, detachments, etc.)

[ ] yes

[ ] no

[ ] I'm not sure

13. Do you have any visual impairment other than previously noted?

[ ] yes

[ ] no

[ ] I'm not sure

14. If you answered YES to any question above (questions 8-13), please describe: ______

Family Ocular History Chart:

Please complete by indicating as appropriate:

15. Glasses before age 6:

[ ] Mother

[ ] Father

[ ] Brother

[ ] Sister

[ ] ½ sibling through mother/father

[ ] Grandfather/mother

[ ] Aunt/uncle

[ ] Other (specify ____________)

16. Patching:

[ ] Mother

[ ] Father

[ ] Brother

[ ] Sister

[ ] ½ sibling through mother/father

[ ] Grandfather/mother

[ ] Aunt/uncle

[ ] Other (specify ____________)

17. Eye muscle surgery:

[ ] Mother

[ ] Father

[ ] Brother

[ ] Sister

[ ] ½ sibling through mother/father

[ ] Grandfather/mother

[ ] Aunt/uncle

[ ] Other (specify ____________)

Personnel and Training Required

These questions may be self-administered (as in the source protocol) or administered by an interviewer with a pencil and paper or computer-assisted interview.

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*.

*There are multiple modes to administer this question (i.e., pencil and paper and computer-assisted interviews)

Equipment Needs

Either a pencil and paper or computer-assisted instrument may be used. If a computer-assisted instrument is used, computer software may be necessary to develop the instrument. The interviewer will require a laptop computer/handheld computer to administer a computer-assisted questionnaire.

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:

Toddler, Child, Adolescent, Adult

Specific Instructions:

None

Research Domain Information

Release Date:

February 26, 2010

Definition

Self-administered questions to assess personal and family history of strabismus.

Purpose

Strabismus can cause blindness due to amblyopia if not detected in early childhood. Determining those who have a personal and/or family history of the disease identifies higher risk individuals.

Selection Rationale

Strabismus can be related to a number of underlying ocular conditions. This protocol collects comprehensive information about the clinical features that can predispose to strabismus and amblyopia. Family history is an important risk factor for strabismus and this protocol also includes questions asking about disease in family members.

Language

English

Standards

StandardNameIDSource
Common Data Elements (CDE)Person Strabismus Family Medical History Text3007663CDE Browser
Logical Observation Identifiers Names and Codes (LOINC)Pers fam hx strabismus proto62696-0LOINC

Process and Review

The Expert Review Panel has not reviewed this measure yet.

Source

Children’s Hospital Boston Center for Strabismus Research, Genetic Studies of Strabismus, Congenital Cranial Dysinnervation Disorders (CCDDs) and their associated anomalies.

Participant Contact Details and Medical Questionnaire, 2008.

General References

Engle EC. (2007). Oculomotility disorders arising from disruptions in brainstem motor neuron development. Arch Neurol, 64(5):633-7.

Engle EC, Andrews C, Law K, Demer JL. (2007). Two pedigrees segregating Duane's retraction syndrome as a dominant trait map to the DURS2 genetic locus. Invest Ophthalmol Vis Sci, 48(1):189-93.

Protocol ID:

111001

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX111001_Amblyopia_Crossed_Wandering_Eye_EverPX111001010000Have you ever had a crossed or wandering eye (amblyopia)?4Variable Mapping
PX111001_Double_Vision_EverPX111001020000Have you ever had double vision?4Variable Mapping
PX111001_Tilt_Head_Looking_Straight_EverPX111001030000Do you ever tilt your head when looking straight?4N/A
PX111001_Eye_Muscle_SurgeryPX111001040000Have you ever undergone eye muscle surgery?4N/A
PX111001_Patch_Eye_Drops_Correction_EverPX111001050000Have you ever worn a patch or used eye drops (atropine penalization) for eye correction?4N/A
PX111001_Glasses_Contacts_EverPX111001060000Have you ever worn glasses or contacts?4Variable Mapping
PX111001_Details_Question_1_To_6PX111001070000If you answered YES to any of the above questions (questions 1-6), please provide further details (i.e. age of onset of eye condition, dates of surgery, name of procedure if known, reason for glasses, etc.)4N/A
PX111001_Coloboma_Absence_Defect_Ocular_TissuePX111001080000Do you have a coloboma? (Absence or defect of ocular tissue ranging from a small pit in the optic disk to extensive defects in the iris, ciliary body, choroid, retina, or optic disk)4Variable Mapping
PX111001_Microphthalmia_Abnormally_Small_EyePX111001090000Do you have microphthalmia? (Abnormally small eye)4N/A
PX111001_Epibulbar_Dermoids_Eye_TumorPX111001100000Do you have epibulbar dermoid? (Eye tumors that are not recurrent or progressive)4N/A
PX111001_Abnormal_Ocular_FeaturesPX111001110000Do you have any abnormal ocular features? (eg. epicanthal folds-tissue overlapping the nasal corner of the eye, telecanthus- increased distance between the inner corners of the eyes, slanting of the palpebral fissure(s)-opening for the eyes between the eyelids?)4Variable Mapping
PX111001_Retinal_Defect_Tear_DetachmentPX111001120000Do you have any retinal defects? (retinal tears, detachments, etc.)4Variable Mapping
PX111001_Other_Visual_ImpairmentPX111001130000Do you have any visual impairment other than previously noted?4N/A
PX111001_Details_Question_8_To_13PX111001140000If you answered YES to any question above (questions 8-13), please describe.4N/A
PX111001_Glasses_Before_6_MotherPX111001150100Glasses before age 6: Mother4N/A
PX111001_Glasses_Before_6_FatherPX111001150200Glasses before age 6: Father4N/A
PX111001_Glasses_Before_6_BrotherPX111001150300Glasses before age 6: Brother4N/A
PX111001_Glasses_Before_6_SisterPX111001150400Glasses before age 6: Sister4N/A
PX111001_Glasses_Before_6_Half_SiblingPX111001150500Glasses before age 6: 1/2sibling through mother/father4N/A
PX111001_Glasses_Before_6_GrandparentPX111001150600Glasses before age 6: Grandfather/mother4N/A
PX111001_Glasses_Before_6_Aunt_UnclePX111001150700Glasses before age 6: Aunt/uncle4N/A
PX111001_Glasses_Before_6_Other_RelativePX111001150800Glasses before age 6: Other4N/A
PX111001_Glasses_Before_6_Other_Relative_SpecifyPX111001150900Specify other relative.4N/A
PX111001_Patching_MotherPX111001160100Patching: Mother4N/A
PX111001_Patching_BrotherPX111001160300Patching: Brother4N/A
PX111001_Patching_SisterPX111001160400Patching: Sister4N/A
PX111001_Patching_Half_SiblingPX111001160500Patching: 1/2sibling through mother/father4N/A
PX111001_Patching_GrandparentPX111001160600Patching: Grandfather/mother4N/A
PX111001_Patching_Aunt_UnclePX111001160700Patching: Aunt/uncle4N/A
PX111001_Patching_Other_RelativePX111001160800Patching: Other4N/A
PX111001_Patching_Other_Relative_SpecifyPX111001160900Specify other relative.4N/A
PX111001_Eye_Muscle_Surgery_MotherPX111001170100Eye muscle surgery: Mother4N/A
PX111001_Eye_Muscle_Surgery_FatherPX111001170200Eye muscle surgery: Father4N/A
PX111001_Eye_Muscle_Surgery_BrotherPX111001170300Eye muscle surgery: Brother4N/A
PX111001_Eye_Muscle_Surgery_SisterPX111001170400Eye muscle surgery: Sister4N/A
PX111001_Eye_Muscle_Surgery_Half_SiblingPX111001170500Eye muscle surgery: 1/2sibling through mother/father4N/A
PX111001_Eye_Muscle_Surgery_GrandparentPX111001170600Eye muscle surgery: Grandfather/mother4N/A
PX111001_Eye_Muscle_Surgery_Aunt_UnclePX111001170700Eye muscle surgery: Aunt/uncle4N/A
PX111001_Eye_Muscle_Surgery_Other_RelativePX111001170800Eye muscle surgery: Other4N/A
PX111001_Eye_Muscle_Surgery_Other_Relative_SpecifyPX111001170900Specify other relative.4N/A
PX111001_Patching_FatherPX111001160200Patching: Father4N/A