Protocol - Personal and Family History of Strabismus

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 Category	Required
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

Lifestage

Toddler, Child, Adolescent, Adult

Participants

Individuals aged ≥ 1 year.

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

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

Standard	Name	ID	Source
Logical Observation Identifiers Names and Codes (LOINC)	Pers fam hx strabismus proto	62696-0	LOINC
Human Phenotype Ontology	Strabismus	HP:0000486	HPO
caDSR Form	PhenX PX111001 - Personal And Family History Of Strabismus	5973143	caDSR Form

Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Childrens Hospital Boston, Participant Contact Details and Medical Questionnaire, 2008

Source

Childrens 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 Duanes 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 Name	Variable ID	Variable Description	dbGaP Mapping
PX111001_Abnormal_Ocular_Features
	PX111001110000	Do you have any abnormal ocular features? more (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 t show less	Variable Mapping
PX111001_Amblyopia_Crossed_Wandering_Eye_Ever
	PX111001010000	Have you ever had a crossed or wandering eye more (amblyopia)? show less	Variable Mapping
PX111001_Coloboma_Absence_Defect_Ocular_Tissue
	PX111001080000	Do you have a coloboma? (Absence or defect more 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) show less	Variable Mapping
PX111001_Details_Question_1_To_6
	PX111001070000	If you answered YES to any of the above more 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.) show less	N/A
PX111001_Details_Question_8_To_13
	PX111001140000	If you answered YES to any question above more (questions 8-13), please describe. show less	N/A
PX111001_Double_Vision_Ever
	PX111001020000	Have you ever had double vision?	Variable Mapping
PX111001_Epibulbar_Dermoids_Eye_Tumor
	PX111001100000	Do you have epibulbar dermoid? (Eye tumors more that are not recurrent or progressive) show less	N/A
PX111001_Eye_Muscle_Surgery
	PX111001040000	Have you ever undergone eye muscle surgery?	N/A
PX111001_Eye_Muscle_Surgery_Aunt_Uncle
	PX111001170700	Eye muscle surgery: Aunt/uncle	N/A
PX111001_Eye_Muscle_Surgery_Brother
	PX111001170300	Eye muscle surgery: Brother	N/A
PX111001_Eye_Muscle_Surgery_Father
	PX111001170200	Eye muscle surgery: Father	N/A
PX111001_Eye_Muscle_Surgery_Grandparent
	PX111001170600	Eye muscle surgery: Grandfather/mother	N/A
PX111001_Eye_Muscle_Surgery_Half_Sibling
	PX111001170500	Eye muscle surgery: 1/2sibling through more mother/father show less	N/A
PX111001_Eye_Muscle_Surgery_Mother
	PX111001170100	Eye muscle surgery: Mother	N/A
PX111001_Eye_Muscle_Surgery_Other_Relative
	PX111001170800	Eye muscle surgery: Other	N/A
PX111001_Eye_Muscle_Surgery_Other_Relative_Specify
	PX111001170900	Specify other relative.	N/A
PX111001_Eye_Muscle_Surgery_Sister
	PX111001170400	Eye muscle surgery: Sister	N/A
PX111001_Glasses_Before_6_Aunt_Uncle
	PX111001150700	Glasses before age 6: Aunt/uncle	N/A
PX111001_Glasses_Before_6_Brother
	PX111001150300	Glasses before age 6: Brother	N/A
PX111001_Glasses_Before_6_Father
	PX111001150200	Glasses before age 6: Father	N/A
PX111001_Glasses_Before_6_Grandparent
	PX111001150600	Glasses before age 6: Grandfather/mother	N/A
PX111001_Glasses_Before_6_Half_Sibling
	PX111001150500	Glasses before age 6: 1/2sibling through more mother/father show less	N/A
PX111001_Glasses_Before_6_Mother
	PX111001150100	Glasses before age 6: Mother	N/A
PX111001_Glasses_Before_6_Other_Relative
	PX111001150800	Glasses before age 6: Other	N/A
PX111001_Glasses_Before_6_Other_Relative_Specify
	PX111001150900	Specify other relative.	N/A
PX111001_Glasses_Before_6_Sister
	PX111001150400	Glasses before age 6: Sister	N/A
PX111001_Glasses_Contacts_Ever
	PX111001060000	Have you ever worn glasses or contacts?	Variable Mapping
PX111001_Microphthalmia_Abnormally_Small_Eye
	PX111001090000	Do you have microphthalmia? (Abnormally small eye)	N/A
PX111001_Other_Visual_Impairment
	PX111001130000	Do you have any visual impairment other than more previously noted? show less	N/A
PX111001_Patching_Aunt_Uncle
	PX111001160700	Patching: Aunt/uncle	N/A
PX111001_Patching_Brother
	PX111001160300	Patching: Brother	N/A
PX111001_Patching_Father
	PX111001160200	Patching: Father	N/A
PX111001_Patching_Grandparent
	PX111001160600	Patching: Grandfather/mother	N/A
PX111001_Patching_Half_Sibling
	PX111001160500	Patching: 1/2sibling through mother/father	N/A
PX111001_Patching_Mother
	PX111001160100	Patching: Mother	N/A
PX111001_Patching_Other_Relative
	PX111001160800	Patching: Other	N/A
PX111001_Patching_Other_Relative_Specify
	PX111001160900	Specify other relative.	N/A
PX111001_Patching_Sister
	PX111001160400	Patching: Sister	N/A
PX111001_Patch_Eye_Drops_Correction_Ever
	PX111001050000	Have you ever worn a patch or used eye drops more (atropine penalization) for eye correction? show less	N/A
PX111001_Retinal_Defect_Tear_Detachment
	PX111001120000	Do you have any retinal defects? (retinal more tears, detachments, etc.) show less	Variable Mapping
PX111001_Tilt_Head_Looking_Straight_Ever
	PX111001030000	Do you ever tilt your head when looking straight?	N/A

Ocular

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, Childrens Hospital Boston Center for Strabismus Research, Coloboma, Microphthalmia, Epibulbar dermoids

Measure Protocols

Protocol ID	Protocol Name
111001	Personal and Family History of Strabismus

Publications

There are no publications listed for this protocol.