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Protocol - Personal and Family History of Strabismus

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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 ____________)

Protocol Name from Source:

The Expert Review Panel has not reviewed this measure yet.

Availability:

Publicly available

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
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Life Stage:

Toddler, Child, Adolescent, Adult

Participants:

Individuals aged ≥ 1 year.

Questions are asked of a parent or guardian if the child is a minor

Specific Instructions:

None

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 Text 3007663 CDE Browser
Logical Observation Identifiers Names and Codes (LOINC) Pers fam hx strabismus proto 62696-0 LOINC
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_Abnormal_Ocular_Features PX111001110000 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?) 4 Variable Mapping
PX111001_Amblyopia_Crossed_Wandering_Eye_Ever PX111001010000 Have you ever had a crossed or wandering eye (amblyopia)? 4 Variable Mapping
PX111001_Coloboma_Absence_Defect_Ocular_Tissue PX111001080000 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) 4 Variable Mapping
PX111001_Details_Question_1_To_6 PX111001070000 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.) 4 N/A
PX111001_Details_Question_8_To_13 PX111001140000 If you answered YES to any question above (questions 8-13), please describe. 4 N/A
PX111001_Double_Vision_Ever PX111001020000 Have you ever had double vision? 4 Variable Mapping
PX111001_Epibulbar_Dermoids_Eye_Tumor PX111001100000 Do you have epibulbar dermoid? (Eye tumors that are not recurrent or progressive) 4 N/A
PX111001_Eye_Muscle_Surgery PX111001040000 Have you ever undergone eye muscle surgery? 4 N/A
PX111001_Eye_Muscle_Surgery_Aunt_Uncle PX111001170700 Eye muscle surgery: Aunt/uncle 4 N/A
PX111001_Eye_Muscle_Surgery_Brother PX111001170300 Eye muscle surgery: Brother 4 N/A
PX111001_Eye_Muscle_Surgery_Father PX111001170200 Eye muscle surgery: Father 4 N/A
PX111001_Eye_Muscle_Surgery_Grandparent PX111001170600 Eye muscle surgery: Grandfather/mother 4 N/A
PX111001_Eye_Muscle_Surgery_Half_Sibling PX111001170500 Eye muscle surgery: 1/2sibling through mother/father 4 N/A
PX111001_Eye_Muscle_Surgery_Mother PX111001170100 Eye muscle surgery: Mother 4 N/A
PX111001_Eye_Muscle_Surgery_Other_Relative PX111001170800 Eye muscle surgery: Other 4 N/A
PX111001_Eye_Muscle_Surgery_Other_Relative_Specify PX111001170900 Specify other relative. 4 N/A
PX111001_Eye_Muscle_Surgery_Sister PX111001170400 Eye muscle surgery: Sister 4 N/A
PX111001_Glasses_Before_6_Aunt_Uncle PX111001150700 Glasses before age 6: Aunt/uncle 4 N/A
PX111001_Glasses_Before_6_Brother PX111001150300 Glasses before age 6: Brother 4 N/A
PX111001_Glasses_Before_6_Father PX111001150200 Glasses before age 6: Father 4 N/A
PX111001_Glasses_Before_6_Grandparent PX111001150600 Glasses before age 6: Grandfather/mother 4 N/A
PX111001_Glasses_Before_6_Half_Sibling PX111001150500 Glasses before age 6: 1/2sibling through mother/father 4 N/A
PX111001_Glasses_Before_6_Mother PX111001150100 Glasses before age 6: Mother 4 N/A
PX111001_Glasses_Before_6_Other_Relative PX111001150800 Glasses before age 6: Other 4 N/A
PX111001_Glasses_Before_6_Other_Relative_Specify PX111001150900 Specify other relative. 4 N/A
PX111001_Glasses_Before_6_Sister PX111001150400 Glasses before age 6: Sister 4 N/A
PX111001_Glasses_Contacts_Ever PX111001060000 Have you ever worn glasses or contacts? 4 Variable Mapping
PX111001_Microphthalmia_Abnormally_Small_Eye PX111001090000 Do you have microphthalmia? (Abnormally small eye) 4 N/A
PX111001_Other_Visual_Impairment PX111001130000 Do you have any visual impairment other than previously noted? 4 N/A
PX111001_Patching_Aunt_Uncle PX111001160700 Patching: Aunt/uncle 4 N/A
PX111001_Patching_Brother PX111001160300 Patching: Brother 4 N/A
PX111001_Patching_Father PX111001160200 Patching: Father 4 N/A
PX111001_Patching_Grandparent PX111001160600 Patching: Grandfather/mother 4 N/A
PX111001_Patching_Half_Sibling PX111001160500 Patching: 1/2sibling through mother/father 4 N/A
PX111001_Patching_Mother PX111001160100 Patching: Mother 4 N/A
PX111001_Patching_Other_Relative PX111001160800 Patching: Other 4 N/A
PX111001_Patching_Other_Relative_Specify PX111001160900 Specify other relative. 4 N/A
PX111001_Patching_Sister PX111001160400 Patching: Sister 4 N/A
PX111001_Patch_Eye_Drops_Correction_Ever PX111001050000 Have you ever worn a patch or used eye drops (atropine penalization) for eye correction? 4 N/A
PX111001_Retinal_Defect_Tear_Detachment PX111001120000 Do you have any retinal defects? (retinal tears, detachments, etc.) 4 Variable Mapping
PX111001_Tilt_Head_Looking_Straight_Ever PX111001030000 Do you ever tilt your head when looking straight? 4 N/A
Research Domain Information
Measure Name:

Personal and Family History of Strabismus

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.

Keywords

Ocular, Eye, Strabismus, Family history of eye disease, Personal history of eye disease, Amblyopia, Double vision, Glasses and contact lens use, Abnormal ocular features, Retinal defects, Visual impairments, Eye muscle surgery, Eye patching, Children's Hospital Boston Center for Strabismus Research, Coloboma, Microphthalmia, Epibulbar dermoids