Protocol - Personal and Family History of Eye Disease and Treatments

Description:

Questions are asked to determine personal and family history of glaucoma, macular degeneration, cataract, and diabetic retinopathy. Questions are also asked to determine the participant's history of laser and/or eye surgery for cataract, glaucoma and diabetic retinopathy.

Specific Instructions:

In the following protocol "DK" equals "don't know".

Protocol:

1. At the present time, would you say your eyesight using both eyes (with glasses or contact lenses, if you wear them) is:

(READ CATEGORIES)

[ ] 1 excellent

[ ] 2 good

[ ] 3 fair

[ ] 4 poor

[ ] 5 very poor

[ ] 6 completely blind

[ ] 8 refused

[ ] 9 DK

CATARACT-RELATED QUESTIONS:

2. Has a doctor ever told you that you had cataracts in either eye?

[ ] 1 yes

[ ] 2 no (skip to Q4)

[ ] 8 refused (skip to Q4)

[ ] 9 DK (skip to Q4)

3. Did you ever have cataract surgery?

[ ] 1 yes

[ ] 2 no

[ ] 8 refused

[ ] 9 DK

4. Do or did any of your relatives have cataracts?

[ ] 1 yes

[ ] 2 no (skip to Q5)

[ ] 8 refused (skip to Q5)

[ ] 9 DK (skip to Q5)

4a. Which relative(s)? We are only interested in blood relatives.

(READ CATEGORIES AND CODE ALL THAT APPLY)

[ ] 01 mother

[ ] 02 father

[ ] 03 sister (ask Q4b)

[ ] 04 brother (ask Q4b)

[ ] 05 daughter (ask Q4b)

[ ] 06 son (ask Q4b)

[ ] 07 maternal grandmother

[ ] 08 maternal grandfather

[ ] 09 paternal grandmother

[ ] 10 paternal grandfather

[ ] 11 mother's sister (ask Q4b)

[ ] 12 mother's brother (ask Q4b)

[ ] 13 father's sister (ask Q4b)

[ ] 14 father's brother (ask Q4b)

[ ] 15 other relative

[ ] 98 refused

[ ] 99 DK

4b. How many of your [RELATIVE(S)] have, had, or were suspected of having cataracts?

(CODE REFUSED AS "98", DON'T KNOW AS "99")

__ sisters

__ brothers

__ daughters

__ sons

__ mother's sisters

__ mother's brothers

__ father's sisters

__ father's brothers

[ ] 98 refused

[ ] 99 DK

GLAUCOMA-RELATED QUESTIONS:

5. Has a doctor ever told you that you had glaucoma, that is, high pressure in the eyes, in either eye?

[ ] 1 yes

[ ] 2 no (skip to Q9)

[ ] 8 refused (skip to Q9)

[ ] 9 DK (skip to Q9)

6. Have you ever been treated for your glaucoma?

[ ] 1 yes

[ ] 2 no (skip to Q9)

[ ] 8 refused (skip to Q9)

[ ] 9 DK (skip to Q9)

7. In the past 12 months, how many times have you seen an eye doctor for your glaucoma?

__ # times

[ ] 98 refused

[ ] 99 DK

8. What treatment or treatments are you receiving or did you receive for your glaucoma:

(READ CATEGORIES AND CODE ALL THAT APPLY)

8a. eye drops?

[ ] 1 yes

[ ] 2 no

[ ] 8 refused

[ ] 9 DK

8b. Laser?

[ ] 1 yes

[ ] 2 no

[ ] 8 refused

[ ] 9 DK

8c. Surgery?

[ ] 1 yes

[ ] 2 no

[ ] 8 refused

[ ] 9 DK

8d. Other?

[ ] 1 yes (specify________)

[ ] 2 no

[ ] 8 refused

[ ] 9 DK

9. Do or did any of your relatives have glaucoma?

[ ] 1 yes

[ ] 2 no (skip to Q10)

[ ] 8 refused (skip to Q10)

[ ] 9 DK (skip to Q10)

9a. Which relative(s)? We are only interested in blood relatives.

(READ CATEGORIES AND CODE ALL THAT APPLY)

[ ] 01 mother

[ ] 02 father

[ ] 03 sister (ask Q9b)

[ ] 04 brother (ask Q9b)

[ ] 05 daughter (ask Q9b)

[ ] 06 son (ask Q9b)

[ ] 07 maternal grandmother

[ ] 08 maternal grandfather

[ ] 09 paternal grandmother

[ ] 10 paternal grandfather

[ ] 11 mother's sister (ask Q9b)

[ ] 12 mother's brother (ask Q9b)

[ ] 13 father's sister (ask Q9b)

[ ] 14 father's brother (ask Q9b)

[ ] 15 other relative

[ ] 98 refused

[ ] 99 DK

9b. How many of your [RELATIVE] have, had, or were suspected of having glaucoma?

(CODE REFUSED AS "98", DON'T KNOW AS "99")

__ sisters

__ brothers

__ daughters

__ sons

__ mother's sisters

__ mother's brothers

__ father's sisters

__ father's brothers

[ ] 98 refused

[ ] 99 DK

MACULAR DEGENERATION-RELATED QUESTIONS:

10. Has a doctor ever told you that you had macular degeneration — sometimes called hardening of the arteries — in the back of the eye, damage to the back part of your eye, the retina, or senile macular degeneration?

[ ] 1 yes

[ ] 2 no

[ ] 8 refused

[ ] 9 DK

11. Do or did any of your relatives have macular degeneration?

[ ] 1 yes

[ ] 2 no (skip to Q12)

[ ] 8 refused (skip to Q12)

[ ] 9 DK (skip to Q12)

11a. Which relative(s)? We are only interested in blood relatives.

(READ CATEGORIES AND CODE ALL THAT APPLY)

[ ] 01 mother

[ ] 02 father

[ ] 03 sister (ask Q11b)

[ ] 04 brother (ask Q11b)

[ ] 05 daughter (ask Q11b)

[ ] 06 son (ask Q11b)

[ ] 07 maternal grandmother

[ ] 08 maternal grandfather

[ ] 09 paternal grandmother

[ ] 10 paternal grandfather

[ ] 11 mother's sister (ask Q11b)

[ ] 12 mother's brother (ask Q11b)

[ ] 13 father's sister (ask Q11b)

[ ] 14 father's brother (ask Q11b)

[ ] 15 other relative

[ ] 98 refused

[ ] 99 DK

11b. How many of your [RELATIVE] have, had, or were suspected of having macular degeneration?

(CODE REFUSED AS "98", DON'T KNOW AS "99")

__ sisters

__ brothers

__ daughters

__ sons

__ mother's sisters

__ mother's brothers

__ father's sisters

__ father's brothers

[ ] 98 refused

[ ] 99 DK

DIABETIC RETINOPATHY-RELATED QUESTIONS:

12. Has a medical doctor ever told you that diabetes has affected blood vessels in your eyes or that you had diabetic retinopathy or diabetic eye disease?

[ ] 1 yes

[ ] 2 no (skip to end)

[ ] 8 refused (skip to end)

[ ] 9 DK (skip to end)

13. Did you ever have laser treatment or surgery for your diabetic eye disease?

[ ] 1 yes, laser treatment

[ ] 2 yes, surgery

[ ] 3 yes, both

[ ] 4 no (skip to end)

[ ] 8 refused (skip to end)

[ ] 9 DK (skip to end)

13a. How many different times have you had laser treatment or surgery for diabetic eye disease?

___ # times

[ ] 98 refused

[ ] 99 DK

Protocol Name from Source:

The Expert Review Panel has not reviewed this measure yet.

Availability:

Publicly available

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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.

Equipment Needs

While the source instrument was developed to be administered by computer, the PhenX Working Group acknowledges these questions can be administered in a non-computerized format (i.e. pencil and paper instrument). Computer software is necessary to develop computer-assisted instruments. 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

Interviewer-administered questionnaire

Life Stage:

Adult

Participants:

Adults aged ≥ 40 years*

* While this protocol was used in a study of adults aged ≥ 40 years, the Ocular Working Group suggests that the same methodology can be used for individuals aged 18 years or older.

Selection Rationale

Questions asking about family history of ocular conditions need to accurately assess the occurrence of disease in family members and also need to accurately identify the relationships between family members. This protocol was chosen because both of these requirements were met using a relatively short questionnaire.

Language

English, Spanish

Standards

Standard	Name	ID	Source
Common Data Elements (CDE)	Person Eye Disorder Family Medical History Text	3007655	CDE Browser
Logical Observation Identifiers Names and Codes (LOINC)	Pers fam hx eye disease proto	62727-3	LOINC

Derived Variables

None

Process and Review

The Expert Review Panel has not reviewed this measure yet.

Source

University of Southern California, Los Angeles Latino Eye Study (LALES). 2000-2003 Section D: Ocular Disease History

Question numbers: 1 (question 1), 2 (question 2), 3 (question 3), 4 (question 4), 4a (question 4a), 4b (question 4b), 5 (question 5), 6 (question 6), 7 (question 7), 8a (question 8a), 8b (question 8b), 8c (question 8c), 8d (question 8d), 10 (question 9), 10a (question 9a), 10b (question 9b), 11 (question 10), 12 (question 11), 12a (question11a), 12b (question 11b), 21 (question 12), 22 (question13), 22a (question 13a)

General References

Varma R, Paz SH, Azen SP, Klein R, Globe D, Torres M, Shufelt C, Preston-Martin S; Los Angeles Latino Eye Study Group. (2004). The Los Angeles Latino Eye Study: design, methods, and baseline data. Ophthalmology, 111(6):1121-31.

Globe DR, Schoua-Glusberg A, Paz S, Yu E, Preston-Martin S, Azen S, Varma R. (2002). Using focus groups to develop a culturally sensitive methodology for epidemiological surveys in a Latino population: findings from the Los Angeles Latino Eye Study (LALES). Ethn Dis, 12(2):259-66.

Doshi V, Ying-Lai M, Azen SP, Varma R; Los Angeles Latino Eye Study Group. (2008). Sociodemographic, family history, and lifestyle risk factors for open-angle glaucoma and ocular hypertension. The Los Angeles Latino Eye Study. Ophthalmology, 115(4):639-647.

Protocol ID:

110901

Variables:

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX110901_Both_Eyes_Eyesight	PX110901010000	At the present time, would you say your eyesight using both eyes (with glasses or contact lenses, if you wear them) is:	Variable Mapping
PX110901_Cataract_Brother	PX110901040204	Do or did any of his/her brother have cataracts?	N/A
PX110901_Cataract_Daughter	PX110901040205	Do or did any of his/her daughter have cataracts?	N/A
PX110901_Cataract_Ever	PX110901020000	Has a doctor ever told you that you had cataracts in either eye?	Variable Mapping
PX110901_Cataract_Father	PX110901040202	Do or did his/her father have cataracts?	N/A
PX110901_Cataract_Fathers_Brother	PX110901040214	Do or did any of his/her father's brother have cataracts?	N/A
PX110901_Cataract_Fathers_Sister	PX110901040213	Do or did any of his/her father's sister have cataracts?	N/A
PX110901_Cataract_Maternal_Grandfather	PX110901040208	Do or did his/her maternal grandfather have cataracts?	N/A
PX110901_Cataract_Maternal_Grandmother	PX110901040207	Do or did his/her maternal grandmother have cataracts?	N/A
PX110901_Cataract_Mother	PX110901040201	Do or did his/her mother have cataracts?	N/A
PX110901_Cataract_Mothers_Brother	PX110901040212	Do or did any of his/her mother's brother have cataracts?	N/A
PX110901_Cataract_Mothers_Sister	PX110901040211	Do or did any of his/her mother's sister have cataracts?	N/A
PX110901_Cataract_Number_Brothers	PX110901040303	How many of your brothers have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Brothers_Coded	PX110901040304	How many of your brothers have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Daughters	PX110901040305	How many of your daughters have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Daughters_Coded	PX110901040306	How many of your daughters have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Fathers_Brothers	PX110901040315	How many of your father's brothers have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Fathers_Brothers_Coded	PX110901040316	How many of your father's brothers have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Fathers_Sisters	PX110901040313	How many of your father's sisters have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Fathers_Sisters_Coded	PX110901040314	How many of your father's sisters have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Mothers_Brothers	PX110901040311	How many of your mother's brothers have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Mothers_Brothers_Coded	PX110901040312	How many of your mother's brothers have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Mothers_Sisters	PX110901040309	How many of your mother's sisters have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Mothers_Sisters_Coded	PX110901040310	How many of your mother's sisters have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Sisters	PX110901040301	How many of your sisters have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Sisters_Coded	PX110901040302	How many of your sisters have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Sons	PX110901040307	How many of your sons have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Number_Sons_Coded	PX110901040308	How many of your sons have, had, or were suspected of having cataracts?	N/A
PX110901_Cataract_Other_Relative	PX110901040215	Do or did any of his/her other relative have cataracts?	N/A
PX110901_Cataract_Paternal_Grandfather	PX110901040210	Do or did his/her paternal grandfather have cataracts?	N/A
PX110901_Cataract_Paternal_Grandmother	PX110901040209	Do or did his/her paternal grandmother have cataracts?	N/A
PX110901_Cataract_Relative	PX110901040100	Do or did any of your relatives have cataracts?	N/A
PX110901_Cataract_Sister	PX110901040203	Do or did any of his/her sister have cataracts?	N/A
PX110901_Cataract_Son	PX110901040206	Do or did any of his/her son have cataracts?	N/A
PX110901_Cataract_Surgery_Ever	PX110901030000	Did you ever have cataract surgery?	Variable Mapping
PX110901_Diabetic_Retinopathy_Ever	PX110901120000	Has a medical doctor ever told you that diabetes has affected blood vessels in your eyes or that you had diabetic retinopathy or diabetic eye disease?	Variable Mapping
PX110901_Diabetic_Retinopathy_Laser_Surgery_Ever	PX110901130000	Did you ever have laser treatment or surgery for your diabetic eye disease?	Variable Mapping
PX110901_Diabetic_Retinopathy_Laser_Surgery_Times	PX110901140000	How many different times have you had laser treatment or surgery for diabetic eye disease?	Variable Mapping
PX110901_Diabetic_Retinopathy_Laser_Surgery_Times_Coded	PX110901140100	How many different times have you had laser treatment or surgery for diabetic eye disease?	Variable Mapping
PX110901_Glaucoma_Brother	PX110901090204	Do or did any of his/her brother have glaucoma?	N/A
PX110901_Glaucoma_Daughter	PX110901090205	Do or did any of his/her daughter have glaucoma?	N/A
PX110901_Glaucoma_Doctor_Visiting_Times	PX110901070000	In the past 12 months, how many times have you seen an eye doctor for your glaucoma?	N/A
PX110901_Glaucoma_Doctor_Visiting_Times_Coded	PX110901070100	In the past 12 months, how many times have you seen an eye doctor for your glaucoma?	N/A
PX110901_Glaucoma_Ever	PX110901050000	Has a doctor ever told you that you had glaucoma, that is, high pressure in the eyes, in either eye?	Variable Mapping
PX110901_Glaucoma_Father	PX110901090202	Do or did his/her father have glaucoma?	N/A
PX110901_Glaucoma_Fathers_Brother	PX110901090214	Do or did any of his/her father's brother have glaucoma?	N/A
PX110901_Glaucoma_Fathers_Sister	PX110901090213	Do or did any of his/her father's sister have glaucoma?	N/A
PX110901_Glaucoma_Maternal_Grandfather	PX110901090208	Do or did his/her maternal grandfather have glaucoma?	N/A
PX110901_Glaucoma_Maternal_Grandmother	PX110901090207	Do or did his/her maternal grandmother have glaucoma?	N/A
PX110901_Glaucoma_Mother	PX110901090201	Do or did his/her mother have glaucoma?	N/A
PX110901_Glaucoma_Mothers_Brother	PX110901090212	Do or did any of his/her mother's brother have glaucoma?	N/A
PX110901_Glaucoma_Mothers_Sister	PX110901090211	Do or did any of his/her mother's sister have glaucoma?	N/A
PX110901_Glaucoma_Number_Brothers	PX110901090303	How many of your brothers have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Brothers_Coded	PX110901090304	How many of your brothers have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Daughters	PX110901090305	How many of your daughters have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Daughters_Coded	PX110901090306	How many of your daughters have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Fathers_Brothers	PX110901090315	How many of your father's brothers have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Fathers_Brothers_Coded	PX110901090316	How many of your father's brothers have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Fathers_Sisters	PX110901090313	How many of your father's sisters have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Fathers_Sisters_Coded	PX110901090314	How many of your father's sisters have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Mothers_Brothers	PX110901090311	How many of your mother's brothers have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Mothers_Brothers_Coded	PX110901090312	How many of your mother's brothers have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Mothers_Sisters	PX110901090309	How many of your mother's sisters have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Mothers_Sisters_Coded	PX110901090310	How many of your mother's sisters have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Sisters	PX110901090301	How many of your sisters have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Sisters_Coded	PX110901090302	How many of your sisters have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Sons	PX110901090307	How many of your sons have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Number_Sons_Coded	PX110901090308	How many of your sons have, had, or were suspected of having glaucoma?	N/A
PX110901_Glaucoma_Other_Relative	PX110901090215	Do or did any of his/her other relative have glaucoma?	N/A
PX110901_Glaucoma_Paternal_Grandfather	PX110901090210	Do or did his/her paternal grandfather have glaucoma?	N/A
PX110901_Glaucoma_Paternal_Grandmother	PX110901090209	Do or did his/her paternal grandmother have glaucoma?	N/A
PX110901_Glaucoma_Relative	PX110901090100	Do or did any of your relatives have glaucoma?	Variable Mapping
PX110901_Glaucoma_Sister	PX110901090203	Do or did any of his/her sister have glaucoma?	N/A
PX110901_Glaucoma_Son	PX110901090206	Do or did any of his/her son have glaucoma?	N/A
PX110901_Glaucoma_Treatment_Ever	PX110901060000	Have you ever been treated for your glaucoma?	N/A
PX110901_Glaucoma_Treatment_Eye_Drop	PX110901080100	What treatment or treatments are you receiving or did you receive for your glaucoma: Eye drops?	Variable Mapping
PX110901_Glaucoma_Treatment_Laser	PX110901080200	What treatment or treatments are you receiving or did you receive for your glaucoma: Laser?	N/A
PX110901_Glaucoma_Treatment_Other	PX110901080401	What treatment or treatments are you receiving or did you receive for your glaucoma: Other?	N/A
PX110901_Glaucoma_Treatment_Other_Specify	PX110901080402	Specify other treatment or treatments you are receiving or you received for your glaucoma.	N/A
PX110901_Glaucoma_Treatment_Surgery	PX110901080300	What treatment or treatments are you receiving or did you receive for your glaucoma: Surgery?	Variable Mapping
PX110901_Macular_Degeneration_Brother	PX110901110204	Do or did any of his/her brother have macular degeneration?	N/A
PX110901_Macular_Degeneration_Daughter	PX110901110205	Do or did any of his/her daughter have macular degeneration?	N/A
PX110901_Macular_Degeneration_Ever	PX110901100000	Has a doctor ever told you that you had macular degeneration - sometimes called hardening of the arteries - in the back of the eye, damage to the back part of your eye, the retina, or senile macular degeneration?	Variable Mapping
PX110901_Macular_Degeneration_Father	PX110901110202	Do or did his/her father have macular degeneration?	N/A
PX110901_Macular_Degeneration_Fathers_Brother	PX110901110214	Do or did any of his/her father's brother have macular degeneration?	N/A
PX110901_Macular_Degeneration_Fathers_Sister	PX110901110213	Do or did any of his/her father's sister have macular degeneration?	N/A
PX110901_Macular_Degeneration_Maternal_Grandfather	PX110901110208	Do or did his/her maternal grandfather have macular degeneration?	N/A
PX110901_Macular_Degeneration_Maternal_Grandmother	PX110901110207	Do or did his/her maternal grandmother have macular degeneration?	N/A
PX110901_Macular_Degeneration_Mother	PX110901110201	Do or did his/her mother have macular degeneration?	N/A
PX110901_Macular_Degeneration_Mothers_Brother	PX110901110212	Do or did any of his/her mother's brother have macular degeneration?	N/A
PX110901_Macular_Degeneration_Mothers_Sister	PX110901110211	Do or did any of his/her mother's sister have macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Brothers	PX110901110303	How many of your brothers have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Brothers_Coded	PX110901110304	How many of your brothers have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Daughters	PX110901110305	How many of your daughters have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Daughters_Coded	PX110901110306	How many of your daughters have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Fathers_Brothers	PX110901110315	How many of your father's brothers have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Fathers_Brothers_Coded	PX110901110316	How many of your father's brothers have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Fathers_Sisters	PX110901110313	How many of your father's sisters have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Fathers_Sisters_Coded	PX110901110314	How many of your father's sisters have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Mothers_Brothers	PX110901110311	How many of your mother's brothers have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Mothers_Brothers_Coded	PX110901110312	How many of your mother's brothers have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Mothers_Sisters	PX110901110309	How many of your mother's sisters have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Mothers_Sisters_Coded	PX110901110310	How many of your mother's sisters have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Sisters	PX110901110301	How many of your sisters have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Sisters_Coded	PX110901110302	How many of your sisters have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Sons	PX110901110307	How many of your sons have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Number_Sons_Coded	PX110901110308	How many of your sons have, had, or were suspected of having macular degeneration?	N/A
PX110901_Macular_Degeneration_Other_Relative	PX110901110215	Do or did any of his/her other relative have macular degeneration?	N/A
PX110901_Macular_Degeneration_Paternal_Grandfather	PX110901110210	Do or did his/her paternal grandfather have macular degeneration?	N/A
PX110901_Macular_Degeneration_Paternal_Grandmother	PX110901110209	Do or did his/her paternal grandmother have macular degeneration?	N/A
PX110901_Macular_Degeneration_Relative	PX110901110100	Do or did any of your relatives have macular degeneration?	N/A
PX110901_Macular_Degeneration_Sister	PX110901110203	Do or did any of his/her sister have macular degeneration?	N/A
PX110901_Macular_Degeneration_Son	PX110901110206	Do or did any of his/her son have macular degeneration?	N/A

Ocular

Measure Name:

Personal and Family History of Eye Disease and Treatments

Release Date:

February 26, 2010

Definition

This questionnaire assesses personal and family history among adults of glaucoma, macular degeneration, cataract, and diabetic retinopathy, including history of any associated laser or eye surgeries.

Purpose

Glaucoma, macular degeneration, cataract and diabetic retinopathy are the most common forms of blindness in the U.S. and throughout the world. All of these conditions have complex inheritance involving multiple genetic and/or environmental risk factors. Family history of these conditions, especially in first degree relatives, is a significant risk factor for disease.

Keywords

Ocular, Family history of eye disease; Personal history of eye disease, Glaucoma, Macular degeneration, Cataract, Diabetic retinopathy, LALES, Los Angeles Latino Eye Study, Laser treatment, Eye surgery

Mapping for PX110901_Both_Eyes_Eyesight

dbGAP Study	dbGAP Variable	dbGAP Variable Description
NIA Long Life Family Study (LLFS)	phv00163305	Rate current eyesight

Mapping for PX110901_Cataract_Ever

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00207690	Has a doctor ever told you that you had cataracts? Q3A [Medical History Questionnaire, exam 4]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00209172	Has a doctor ever told you that you have eye problems as a result of cataract, or cloudiness of the lens, in one or both of your eyes? Q5A [Retinal Examination Form, exam 4]
Cardiovascular Health Study (CHS) Cohort	phv00101805	Dr said you had cataracts
Cardiovascular Health Study (CHS) Cohort	phv00104162	CATARACTS
Cardiovascular Health Study (CHS) Cohort	phv00106082	CATARACTS
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00051671	C2d. Vital and complication status. Eye complication: cataracts
eMERGE Network Combined Dataset	phv00182457	Case/control status for cataract phenotype
Framingham Cohort	phv00054700	CATARACT HISTORY
Framingham Cohort	phv00054810	DEFINITIVE EXAM: DEFINITIVE EXAMINATION STAUS, CATARACT
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00159083	HAVE YOU EVER BEEN TOLD BY A DOCTOR THAT YOU HAD A CATARACT IN EITHER EYE?
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00159186	HAVE YOU EVER BEEN TOLD BY A DOCTOR THAT YOU HAD A CATARACT IN EITHER EYE?
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085833	TOLD BY EYE DOCTOR YOU HAVE OR HAD A CATARACT IN EITHER EYES
NEI Age-Related Eye Disease Study (AREDS)	phv00000015	FINAL CATARACT PHENOTYPE (PARTICIPANTS WITH A GENETIC SPECIMEN)
NEI Age-Related Eye Disease Study (AREDS)	phv00053756	FINAL CATARACT PHENOTYPE (ALL PARTICIPANTS)
Pediatric Cardiac Genetics Consortium (PCGC)	phv00180778	Cataracts
Whole Genome Association Twin Study of Myopia and Glaucoma Risk Factors	phv00066485	Presence of cataract (lens cloudiness)
Women's Health Initiative	phv00170637	F33 Cataracts
Women's Health Initiative	phv00170719	F33 Cataracts
Women's Health Initiative	phv00077632	Cataracts
Women's Health Initiative	phv00077632	Cataracts
Women's Health Initiative	phv00077757	Cataract(s)
Women's Health Initiative	phv00077757	Cataract(s)
Women's Health Initiative	phv00077867	Cataract(s)
Women's Health Initiative	phv00077867	Cataract(s)
Women's Health Initiative	phv00078031	Cataract(s)
Women's Health Initiative	phv00078031	Cataract(s)
Women's Health Initiative	phv00078171	Cataract(s)
Women's Health Initiative	phv00078171	Cataract(s)
Women's Health Initiative	phv00078312	Cataract(s)
Women's Health Initiative	phv00078312	Cataract(s)
Women's Health Initiative	phv00078510	Cataract ever
Women's Health Initiative	phv00078510	Cataract ever
Women's Health Initiative	phv00080356	F33 Cataracts
Women's Health Initiative	phv00080414	F33 Cataracts
Women's Health Initiative	phv00156280	F33 Cataracts
Women's Health Initiative	phv00156368	F33 Cataracts

Mapping for PX110901_Cataract_Surgery_Ever

dbGAP Study	dbGAP Variable	dbGAP Variable Description
A Genome-Wide Association Study of Fuchs' Endothelial Corneal Dystrophy (FECD)	phv00181951	Has the participant had any previous cataract surgery? (corneal or glaucoma surgery/laser eyes are excluded)
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00209138	Have you ever had eye surgery because of cataracts? Q5c [Retinal Examination Form, exam 3]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00209174	Have you ever had eye surgery because of cataracts? Q5C [Retinal Examination Form, exam 4]
Cardiovascular Health Study (CHS) Cohort	phv00101807	Surgery for cataracts
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00034340	Patient has a history of: aphakia (cataract extraction)
Framingham Cohort	phv00003501	EYE HISTORY: CATARACT OPERATION OR LENS IMPLANT IN EYE
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085834	CATARACT OPERATION
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00159084	HAVE YOU HAD CATARACT SURGERY?
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00159187	HAVE YOU HAD CATARACT SURGERY?
NEI Age-Related Eye Disease Study (AREDS)	phv00053847	CATARACT SURGERY RT EYE (ALL PARTICIPANTS)
NEI Age-Related Eye Disease Study (AREDS)	phv00053848	CATARACT SURGERY LT EYE (ALL PARTICIPANTS)
NEI Age-Related Eye Disease Study (AREDS)	phv00053931	CATARACT SURGERY - RIGHT EYE (ALL PARTICIPANTS)
NEI Age-Related Eye Disease Study (AREDS)	phv00053932	CATARACT SURGERY - LEFT EYE (ALL PARTICIPANTS)

Mapping for PX110901_Diabetic_Retinopathy_Ever

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Cardiovascular Health Study (CHS) Cohort	phv00101946	Diabetic retinopathy
eMERGE Network Combined Dataset	phv00182451	Case/control status for diabetic retinopathy
Framingham Cohort	phv00054812	DEFINITIVE EXAM: DEFINITIVE EXAMINATION STAUS, DIABETIC RETINOPATHY
GENEVA: The Atherosclerosis Risk in Communities (ARIC) Study	phv00080633	Diabetic retinopathy (visit 3)
Type 2 Diabetes in African Americans, GWAS and Exome Sequencing	phv00066349	Individual has diabetic retinopathy reported by ophthalmologist or laser treatment with photocoagulation

Mapping for PX110901_Diabetic_Retinopathy_Laser_Surgery_Ever

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Cardiovascular Health Study (CHS) Cohort	phv00101946	Diabetic retinopathy
eMERGE Network Combined Dataset	phv00182451	Case/control status for diabetic retinopathy
Framingham Cohort	phv00054812	DEFINITIVE EXAM: DEFINITIVE EXAMINATION STAUS, DIABETIC RETINOPATHY
GENEVA: The Atherosclerosis Risk in Communities (ARIC) Study	phv00080633	Diabetic retinopathy (visit 3)
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085838	LASER TREATMENT APPLIED TO RETINA, BACK OF EYE BECAUSE OF DIABETIC RETINOPATHY
Type 2 Diabetes in African Americans, GWAS and Exome Sequencing	phv00066349	Individual has diabetic retinopathy reported by ophthalmologist or laser treatment with photocoagulation

Mapping for PX110901_Diabetic_Retinopathy_Laser_Surgery_Times

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085838	LASER TREATMENT APPLIED TO RETINA, BACK OF EYE BECAUSE OF DIABETIC RETINOPATHY

Mapping for PX110901_Diabetic_Retinopathy_Laser_Surgery_Times_Coded

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085838	LASER TREATMENT APPLIED TO RETINA, BACK OF EYE BECAUSE OF DIABETIC RETINOPATHY

Mapping for PX110901_Glaucoma_Ever

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00209130	Has a doctor ever told you that you have eye problems as a result of glaucoma, or increased pressure inside one or both of your eyes? Q3a [Retinal Examination Form, exam 3]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00209166	Has a doctor ever told you that you have eye problems as a result of glaucoma, or increased pressure inside one or both of your eyes? Q3A [Retinal Examination Form, exam 4]
Cardiovascular Health Study (CHS) Cohort	phv00101799	Dr said you had glaucoma
Cardiovascular Health Study (CHS) Cohort	phv00104163	GLAUCOMA
Cardiovascular Health Study (CHS) Cohort	phv00106083	GLAUCOMA
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00030892	History of glaucoma
Framingham Cohort	phv00054809	DEFINITIVE EXAM: DEFINITIVE EXAMINATION STAUS, GLAUCOMA
NEI Age-Related Eye Disease Study (AREDS)	phv00053947	HISTORY OF GLAUCOMA (ALL PARTICIPANTS)
NIA Long Life Family Study (LLFS)	phv00163290	Glaucoma diagnosed?
Women's Health Initiative	phv00078509	Glaucoma ever
Women's Health Initiative	phv00080342	F33 Glaucoma
Women's Health Initiative	phv00080400	F33 Glaucoma
Women's Health Initiative	phv00156266	F33 Glaucoma
Women's Health Initiative	phv00156354	F33 Glaucoma
Women's Health Initiative	phv00170623	F33 Glaucoma
Women's Health Initiative	phv00170705	F33 Glaucoma

Mapping for PX110901_Glaucoma_Relative

dbGAP Study	dbGAP Variable	dbGAP Variable Description
NHLBI Cleveland Family Study (CFS) Candidate Gene Association Resource (CARe)	phv00123461	83 Any biological relative had Glaucoma

Mapping for PX110901_Glaucoma_Treatment_Eye_Drop

dbGAP Study	dbGAP Variable	dbGAP Variable Description
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00049432	B12b1r. Current medication. Require prescription: glaucoma drops-right eye
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00049433	B12b2l. Current medication. Require prescription: glaucoma drops-left eye
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00049601	B15. Current medication: require prescription-glaucoma drops, right eye
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00049602	B15. Current medication: require prescription-glaucoma drops, left eye
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085841	PILOCARPINE EYE DROP USE FOR GLAUCOMA MEDICATION

Mapping for PX110901_Glaucoma_Treatment_Surgery

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085842	SURGERY FOR YOUR GLAUCOMA

Mapping for PX110901_Macular_Degeneration_Ever

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Age related Macular Degeneration - MMAP Cohort: Association and Sequencing Studies	phv00196856	Case - Control status
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00209132	Has a doctor ever told you that you have eye problems as a result of age-related macular degeneration? Q4a [Retinal Examination Form, exam 3]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00209168	Has a doctor ever told you that you have eye problems as a result of age-related macular degeneration? Q4A [Retinal Examination Form, exam 4]
Framingham Cohort	phv00054702	MACULAR DEGENERATION HISTORY
Genetic Epidemiology of COPD (COPDGene)	phv00159617	Macular degeneration
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085844	AGE-RELATED MACULAR DEGENERATION
Resource for Genetic Epidemiology Research on Aging (GERA)	phv00196781	Macular Degeneration
Women's Health Initiative	phv00077633	Macular degeneration of retina
Women's Health Initiative	phv00077758	Macular degeneration of retina
Women's Health Initiative	phv00077868	Macular degeneration of retina
Women's Health Initiative	phv00078032	Macular degeneration of retina
Women's Health Initiative	phv00078172	Macular degeneration of retina
Women's Health Initiative	phv00078313	Macular degeneration of retina
Women's Health Initiative	phv00156286	F33 Macular Degeneration
Women's Health Initiative	phv00156374	F33 Macular Degeneration
Women's Health Initiative	phv00170643	F33 Macular Degeneration
Women's Health Initiative	phv00170725	F33 Macular Degeneration
Women's Health Initiative	phv00193681	F33 Macular Degeneration
Women's Health Initiative	phv00193793	F33 Macular Degeneration

Protocol - Personal and Family History of Eye Disease and Treatments

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