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 participants history of laser and/or eye surgery for cataract, glaucoma and diabetic retinopathy.

Specific Instructions

In the following protocol "DK" equals "dont 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[ ]mothers sister (ask Q4b)

12[ ]mothers brother (ask Q4b)

13[ ]fathers sister (ask Q4b)

14[ ]fathers 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", DONT KNOW AS "99")

__ sisters

__ brothers

__ daughters

__ sons

__ mothers sisters

__ mothers brothers

__ fathers sisters

__ fathers 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[ ]mothers sister (ask Q9b)

12[ ]mothers brother (ask Q9b)

13[ ]fathers sister (ask Q9b)

14[ ]fathers 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", DONT KNOW AS "99")

__ sisters

__ brothers

__ daughters

__ sons

__ mothers sisters

__ mothers brothers

__ fathers sisters

__ fathers 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[ ]mothers sister (ask Q11b)

12[ ]mothers brother (ask Q11b)

13[ ]fathers sister (ask Q11b)

14[ ]fathers 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", DONT KNOW AS "99")

__ sisters

__ brothers

__ daughters

__ sons

__ mothers sisters

__ mothers brothers

__ fathers sisters

__ fathers 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

Availability

Available

Download PDF

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

Lifestage

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
caDSR 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
Human Phenotype Ontology	Abnormality of the eye	HP:0000478	HPO

Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

University of Southern California, Los Angeles Latino Eye Study (LALES), 2000-2003

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 more eyesight using both eyes (with glasses or contact lenses, if you wear them) is: show less	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?	Variable Mapping
PX110901_Cataract_Ever
	PX110901020000	Has a doctor ever told you that you had more cataracts in either eye? show less	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 more have cataracts? show less	N/A
PX110901_Cataract_Fathers_Sister
	PX110901040213	Do or did any of his/her father's sister more have cataracts? show less	N/A
PX110901_Cataract_Maternal_Grandfather
	PX110901040208	Do or did his/her maternal grandfather have more cataracts? show less	Variable Mapping
PX110901_Cataract_Maternal_Grandmother
	PX110901040207	Do or did his/her maternal grandmother have more cataracts? show less	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 more have cataracts? show less	N/A
PX110901_Cataract_Mothers_Sister
	PX110901040211	Do or did any of his/her mother's sister more have cataracts? show less	N/A
PX110901_Cataract_Number_Brothers
	PX110901040303	How many of your brothers have, had, or were more suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Brothers_Coded
	PX110901040304	How many of your brothers have, had, or were more suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Daughters
	PX110901040305	How many of your daughters have, had, or more were suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Daughters_Coded
	PX110901040306	How many of your daughters have, had, or more were suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Fathers_Brothers
	PX110901040315	How many of your father's brothers have, more had, or were suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Fathers_Brothers_Coded
	PX110901040316	How many of your father's brothers have, more had, or were suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Fathers_Sisters
	PX110901040313	How many of your father's sisters have, had, more or were suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Fathers_Sisters_Coded
	PX110901040314	How many of your father's sisters have, had, more or were suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Mothers_Brothers
	PX110901040311	How many of your mother's brothers have, more had, or were suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Mothers_Brothers_Coded
	PX110901040312	How many of your mother's brothers have, more had, or were suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Mothers_Sisters
	PX110901040309	How many of your mother's sisters have, had, more or were suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Mothers_Sisters_Coded
	PX110901040310	How many of your mother's sisters have, had, more or were suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Sisters
	PX110901040301	How many of your sisters have, had, or were more suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Sisters_Coded
	PX110901040302	How many of your sisters have, had, or were more suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Sons
	PX110901040307	How many of your sons have, had, or were more suspected of having cataracts? show less	N/A
PX110901_Cataract_Number_Sons_Coded
	PX110901040308	How many of your sons have, had, or were more suspected of having cataracts? show less	N/A
PX110901_Cataract_Other_Relative
	PX110901040215	Do or did any of his/her other relative have more cataracts? show less	N/A
PX110901_Cataract_Paternal_Grandfather
	PX110901040210	Do or did his/her paternal grandfather have more cataracts? show less	N/A
PX110901_Cataract_Paternal_Grandmother
	PX110901040209	Do or did his/her paternal grandmother have more cataracts? show less	Variable Mapping
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?	Variable Mapping
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 more diabetes has affected blood vessels in your eyes or that you had diabetic retinopathy or diabetic eye disease? show less	Variable Mapping
PX110901_Diabetic_Retinopathy_Laser_Surgery_Ever
	PX110901130000	Did you ever have laser treatment or surgery more for your diabetic eye disease? show less	N/A
PX110901_Diabetic_Retinopathy_Laser_Surgery_Times
	PX110901140000	How many different times have you had laser more treatment or surgery for diabetic eye disease? show less	N/A
PX110901_Diabetic_Retinopathy_Laser_Surgery_Times_Coded
	PX110901140100	How many different times have you had laser more treatment or surgery for diabetic eye disease? show less	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 more you seen an eye doctor for your glaucoma? show less	N/A
PX110901_Glaucoma_Doctor_Visiting_Times_Coded
	PX110901070100	In the past 12 months, how many times have more you seen an eye doctor for your glaucoma? show less	N/A
PX110901_Glaucoma_Ever
	PX110901050000	Has a doctor ever told you that you had more glaucoma, that is, high pressure in the eyes, in either eye? show less	N/A
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 more have glaucoma? show less	N/A
PX110901_Glaucoma_Fathers_Sister
	PX110901090213	Do or did any of his/her father's sister more have glaucoma? show less	Variable Mapping
PX110901_Glaucoma_Maternal_Grandfather
	PX110901090208	Do or did his/her maternal grandfather have more glaucoma? show less	N/A
PX110901_Glaucoma_Maternal_Grandmother
	PX110901090207	Do or did his/her maternal grandmother have more glaucoma? show less	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 more have glaucoma? show less	N/A
PX110901_Glaucoma_Mothers_Sister
	PX110901090211	Do or did any of his/her mother's sister more have glaucoma? show less	N/A
PX110901_Glaucoma_Number_Brothers
	PX110901090303	How many of your brothers have, had, or were more suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Brothers_Coded
	PX110901090304	How many of your brothers have, had, or were more suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Daughters
	PX110901090305	How many of your daughters have, had, or more were suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Daughters_Coded
	PX110901090306	How many of your daughters have, had, or more were suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Fathers_Brothers
	PX110901090315	How many of your father's brothers have, more had, or were suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Fathers_Brothers_Coded
	PX110901090316	How many of your father's brothers have, more had, or were suspected of having glaucoma? show less	Variable Mapping
PX110901_Glaucoma_Number_Fathers_Sisters
	PX110901090313	How many of your father's sisters have, had, more or were suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Fathers_Sisters_Coded
	PX110901090314	How many of your father's sisters have, had, more or were suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Mothers_Brothers
	PX110901090311	How many of your mother's brothers have, more had, or were suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Mothers_Brothers_Coded
	PX110901090312	How many of your mother's brothers have, more had, or were suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Mothers_Sisters
	PX110901090309	How many of your mother's sisters have, had, more or were suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Mothers_Sisters_Coded
	PX110901090310	How many of your mother's sisters have, had, more or were suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Sisters
	PX110901090301	How many of your sisters have, had, or were more suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Sisters_Coded
	PX110901090302	How many of your sisters have, had, or were more suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Sons
	PX110901090307	How many of your sons have, had, or were more suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Number_Sons_Coded
	PX110901090308	How many of your sons have, had, or were more suspected of having glaucoma? show less	N/A
PX110901_Glaucoma_Other_Relative
	PX110901090215	Do or did any of his/her other relative have more glaucoma? show less	N/A
PX110901_Glaucoma_Paternal_Grandfather
	PX110901090210	Do or did his/her paternal grandfather have more glaucoma? show less	N/A
PX110901_Glaucoma_Paternal_Grandmother
	PX110901090209	Do or did his/her paternal grandmother have more glaucoma? show less	N/A
PX110901_Glaucoma_Relative
	PX110901090100	Do or did any of your relatives have glaucoma?	N/A
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 more receiving or did you receive for your glaucoma: Eye drops? show less	N/A
PX110901_Glaucoma_Treatment_Laser
	PX110901080200	What treatment or treatments are you more receiving or did you receive for your glaucoma: Laser? show less	N/A
PX110901_Glaucoma_Treatment_Other
	PX110901080401	What treatment or treatments are you more receiving or did you receive for your glaucoma: Other? show less	N/A
PX110901_Glaucoma_Treatment_Other_Specify
	PX110901080402	Specify other treatment or treatments you more are receiving or you received for your glaucoma. show less	N/A
PX110901_Glaucoma_Treatment_Surgery
	PX110901080300	What treatment or treatments are you more receiving or did you receive for your glaucoma: Surgery? show less	N/A
PX110901_Macular_Degeneration_Brother
	PX110901110204	Do or did any of his/her brother have more macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Daughter
	PX110901110205	Do or did any of his/her daughter have more macular degeneration? show less	Variable Mapping
PX110901_Macular_Degeneration_Ever
	PX110901100000	Has a doctor ever told you that you had more 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? show less	N/A
PX110901_Macular_Degeneration_Father
	PX110901110202	Do or did his/her father have macular more degeneration? show less	Variable Mapping
PX110901_Macular_Degeneration_Fathers_Brother
	PX110901110214	Do or did any of his/her father's brother more have macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Fathers_Sister
	PX110901110213	Do or did any of his/her father's sister more have macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Maternal_Grandfather
	PX110901110208	Do or did his/her maternal grandfather have more macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Maternal_Grandmother
	PX110901110207	Do or did his/her maternal grandmother have more macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Mother
	PX110901110201	Do or did his/her mother have macular more degeneration? show less	Variable Mapping
PX110901_Macular_Degeneration_Mothers_Brother
	PX110901110212	Do or did any of his/her mother's brother more have macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Mothers_Sister
	PX110901110211	Do or did any of his/her mother's sister more have macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Brothers
	PX110901110303	How many of your brothers have, had, or were more suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Brothers_Coded
	PX110901110304	How many of your brothers have, had, or were more suspected of having macular degeneration? show less	Variable Mapping
PX110901_Macular_Degeneration_Number_Daughters
	PX110901110305	How many of your daughters have, had, or more were suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Daughters_Coded
	PX110901110306	How many of your daughters have, had, or more were suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Fathers_Brothers
	PX110901110315	How many of your father's brothers have, more had, or were suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Fathers_Brothers_Coded
	PX110901110316	How many of your father's brothers have, more had, or were suspected of having macular degeneration? show less	Variable Mapping
PX110901_Macular_Degeneration_Number_Fathers_Sisters
	PX110901110313	How many of your father's sisters have, had, more or were suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Fathers_Sisters_Coded
	PX110901110314	How many of your father's sisters have, had, more or were suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Mothers_Brothers
	PX110901110311	How many of your mother's brothers have, more had, or were suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Mothers_Brothers_Coded
	PX110901110312	How many of your mother's brothers have, more had, or were suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Mothers_Sisters
	PX110901110309	How many of your mother's sisters have, had, more or were suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Mothers_Sisters_Coded
	PX110901110310	How many of your mother's sisters have, had, more or were suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Sisters
	PX110901110301	How many of your sisters have, had, or were more suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Sisters_Coded
	PX110901110302	How many of your sisters have, had, or were more suspected of having macular degeneration? show less	Variable Mapping
PX110901_Macular_Degeneration_Number_Sons
	PX110901110307	How many of your sons have, had, or were more suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Number_Sons_Coded
	PX110901110308	How many of your sons have, had, or were more suspected of having macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Other_Relative
	PX110901110215	Do or did any of his/her other relative have more macular degeneration? show less	Variable Mapping
PX110901_Macular_Degeneration_Paternal_Grandfather
	PX110901110210	Do or did his/her paternal grandfather have more macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Paternal_Grandmother
	PX110901110209	Do or did his/her paternal grandmother have more macular degeneration? show less	N/A
PX110901_Macular_Degeneration_Relative
	PX110901110100	Do or did any of your relatives have macular more degeneration? show less	N/A
PX110901_Macular_Degeneration_Sister
	PX110901110203	Do or did any of his/her sister have macular more degeneration? show less	N/A
PX110901_Macular_Degeneration_Son
	PX110901110206	Do or did any of his/her son have macular more degeneration? show less	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

Measure Protocols

Protocol ID	Protocol Name
110901	Personal and Family History of Eye Disease and Treatments

Publications

There are no publications listed for this protocol.

Mapping for PX110901_Both_Eyes_Eyesight

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_Cataract_Daughter

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Pediatric Cardiac Genetics Consortium (PCGC)	phv00180779	Coloboma

Mapping for PX110901_Cataract_Ever

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085855	LAZY EYE OR AMBLYOPIA

Mapping for PX110901_Cataract_Maternal_Grandfather

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Pediatric Cardiac Genetics Consortium (PCGC)	phv00180782	Epicanthal folds

Mapping for PX110901_Cataract_Paternal_Grandmother

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00209667	SSR detachment [Retinal Exam Light Box, exam 3]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00209673	Retinal detachment [Retinal Exam Light Box, exam 3]
Cardiovascular Health Study (CHS) Cohort	phv00101934	RETINAL DETACHMENT+
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085843	RETINAL DETACHMENT OF EYE

Mapping for PX110901_Cataract_Sister

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Genes and Blood Clotting Study (GABC)	phv00124398	Do you wear prescription eye glasses or contact lenses?

Mapping for PX110901_Cataract_Surgery_Ever

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00210395	Double vision [Stroke, exam 1]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00210412	Double vision [Stroke, exam 2]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00210431	Double vision [Stroke, exam 3]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00210450	Double vision [Stroke, exam 4]
Framingham Cohort	phv00004325	DOUBLE VISION
Framingham Cohort	phv00004740	DOUBLE VISION
Framingham Cohort	phv00005107	DOUBLE VISION
Framingham Cohort	phv00005731	DOUBLE VISION
Framingham Cohort	phv00006567	CEREBROVASCULAR - DOUBLE VISION
Framingham Cohort	phv00007791	DOUBLE VISION
Framingham Cohort	phv00008495	DOUBLE VISION
Framingham Cohort	phv00008914	DOUBLE VISION
Framingham Cohort	phv00009342	DOUBLE VISION
Framingham Cohort	phv00070458	DOUBLE VISION
The Genomics and Randomized Trials Network (GARNET) Vitamin Intervention Stroke Prevention (VISP) trial	phv00168938	Diagnosis from Stroke Eligibility Algorithm: Section D - Double Vision
Whole Genome Association Study of Bipolar Disorder	phv00017281	D2b. double vision? (Participants with European ancestry). DIGS4
Whole Genome Association Study of Bipolar Disorder	phv00052083	D2b Double vision, (African American participants). DIGS4

Mapping for PX110901_Diabetic_Retinopathy_Ever

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Cardiovascular Health Study (CHS) Cohort	phv00101814	How much difficulty with small print

Mapping for PX110901_Diabetic_Retinopathy_Laser_Surgery_Times_Coded

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Cardiovascular Health Study (CHS) Cohort	phv00101820	How much difficulty recognizing people

Mapping for PX110901_Glaucoma_Fathers_Sister

dbGAP Study	dbGAP Variable	dbGAP Variable Description
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00030911	Total number of letters correct at 4 meters - right eye
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00049643	C2. Visual acuity measurements. Total numbers of letters read correctly at 4 meters - right eye
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00049787	C2. Visual activity measurements. Total number of correct letters at 4 meters - right eye

Mapping for PX110901_Glaucoma_Number_Fathers_Brothers_Coded

dbGAP Study	dbGAP Variable	dbGAP Variable Description
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00030913	Total number of letters correct at 4 meters - left eye
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00049658	C2. Total numbers of letters read correctly at 4 meters - left eye
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00049802	C2. Total number of correct letters correct at 4 meters - left eye

Mapping for PX110901_Macular_Degeneration_Daughter

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Cardiovascular Health Study (CHS) Cohort	phv00101816	How much difficulty with newspapers

Mapping for PX110901_Macular_Degeneration_Father

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

Mapping for PX110901_Macular_Degeneration_Mother

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00202876	[General health]. Compare to other people your age, would you say that your health has been excellent, good, fair or poor? [Annual Follow-up Questionnaire Form, AFUA]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00214220	In general, would you say your health is (exc, v.good, good, fair, poor)?
Cardiovascular Health Study (CHS) Cohort	phv00098808	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00098808	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00100305	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00100305	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00101483	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00101483	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00102631	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00102631	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00103156	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103156	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103209	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103209	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103261	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103261	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103314	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103314	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103366	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103366	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103419	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103419	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103471	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103471	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103524	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103524	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103576	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103576	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103629	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103629	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103681	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103681	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103732	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00103732	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00104034	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00104034	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00105125	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00105125	GENERAL HEALTH
Cardiovascular Health Study (CHS) Cohort	phv00106999	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00106999	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00107886	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00107886	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00108575	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00108575	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00109343	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00109343	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00109990	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00109990	YOUR HEALTH IN GENERAL
Cardiovascular Health Study (CHS) Cohort	phv00197596	In general, would you say your health is (exc, v.good, good, fair, poor)?
Cardiovascular Health Study (CHS) Cohort	phv00197596	In general, would you say your health is (exc, v.good, good, fair, poor)?
Cardiovascular Health Study (CHS) Cohort	phv00198975	1 health, in general
Cardiovascular Health Study (CHS) Cohort	phv00198975	1 health, in general
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00028435	Generally, how would you rate your health
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00050271	1. Health status: generally how would you rate/health
Framingham Cohort	phv00003716	IN GENERAL, HOW IS YOUR HEALTH NOW?
Framingham Cohort	phv00003716	IN GENERAL, HOW IS YOUR HEALTH NOW?
Framingham Cohort	phv00004134	IN GENERAL, HOW IS YOUR HEALTH NOW?
Framingham Cohort	phv00004134	IN GENERAL, HOW IS YOUR HEALTH NOW?
Framingham Cohort	phv00004571	YOUR HEALTH NOW IN GENERAL
Framingham Cohort	phv00004571	YOUR HEALTH NOW IN GENERAL
Framingham Cohort	phv00005334	ACTIVITIES A - IN GENERAL, HOW IS YOUR HEALTH NOW?
Framingham Cohort	phv00005334	CLINICAL DIAGNOSTIC IMPRESSION: ASTHMA
Framingham Cohort	phv00006097	IN GENERAL, HOW IS YOU HEALTH NOW? (PROXY MAY NOT BE USED TO HELP COMPLETE THIS SECTION)
Framingham Cohort	phv00006097	IN GENERAL, HOW IS YOU HEALTH NOW? (PROXY MAY NOT BE USED TO HELP COMPLETE THIS SECTION)
Framingham Cohort	phv00006356	IN GENERAL, HOW IS YOUR HEALTH NOW
Framingham Cohort	phv00006356	IN GENERAL, HOW IS YOUR HEALTH NOW
Framingham Cohort	phv00006701	IN GENERAL, HOW IS YOUR HEALTH NOW? (PROXY MAY NOT BE USED TO HELP COMPLETE THIS SECTION)
Framingham Cohort	phv00006701	IN GENERAL, HOW IS YOUR HEALTH NOW? (PROXY MAY NOT BE USED TO HELP COMPLETE THIS SECTION)
Framingham Cohort	phv00007153	IN GENERAL, HOW IS YOUR HEALTH NOW? (PROXY MAY NOT BE USED TO HELP COMPLETE THIS SECTION)
Framingham Cohort	phv00007153	IN GENERAL, HOW IS YOUR HEALTH NOW? (PROXY MAY NOT BE USED TO HELP COMPLETE THIS SECTION)
Framingham Cohort	phv00009136	YOUR HEALTH NOW IN GENERAL
Framingham Cohort	phv00009136	YOUR HEALTH NOW IN GENERAL
Framingham Cohort	phv00009594	IN GENERAL, HOW IS YOUR HEALTH NOW
Framingham Cohort	phv00009594	IN GENERAL, HOW IS YOUR HEALTH NOW
Framingham Cohort	phv00010537	IN GENERAL, HOW IS YOUR HEALTH NOW PROXY MAY NOT BE USED TO HELP COMPLETE THIS SECTION
Framingham Cohort	phv00010537	IN GENERAL, HOW IS YOUR HEALTH NOW PROXY MAY NOT BE USED TO HELP COMPLETE THIS SECTION
Framingham Cohort	phv00021260	IN GENERAL, WOULD YOU SAY YOUR HEALTH IS :
Framingham Cohort	phv00021260	IN GENERAL, WOULD YOU SAY YOUR HEALTH IS :
Framingham Cohort	phv00022731	IN GENERAL, WOULD YOU SAY YOUR HEALTH IS:
Framingham Cohort	phv00022731	IN GENERAL, WOULD YOU SAY YOUR HEALTH IS:
Framingham Cohort	phv00055417	In general, would you say your health is (exc, v.good, good, fair, poor)?
Framingham Cohort	phv00055417	In general, would you say your health is (exc, v.good, good, fair, poor)?
Framingham Cohort	phv00056870	In general, would you say your health is:
Framingham Cohort	phv00056870	In general, would you say your health is:
Framingham Cohort	phv00070599	IN GENERAL, HOW IS YOUR HEALTH NOW? (PROXY MAY NOT BE USED TO HELP COMPLETE THIS SECTION)
Framingham Cohort	phv00070599	IN GENERAL, HOW IS YOUR HEALTH NOW? (PROXY MAY NOT BE USED TO HELP COMPLETE THIS SECTION)
Framingham Cohort	phv00072544	IN GENERAL, HOW WOULD YOU SAY YOUR HEALTH IS?
Framingham Cohort	phv00072544	IN GENERAL, HOW WOULD YOU SAY YOUR HEALTH IS?
Framingham Cohort	phv00177635	SF-12 Health Survey (Standard)-Self administered: In general, would you say your health is:
Framingham Cohort	phv00177635	SF-12 Health Survey (Standard)-Self administered: In general, would you say your health is:
Framingham Cohort	phv00250312	Functional Performance: In general, how is your health now?
Framingham Cohort	phv00251092	Self-reported Performance - Part I: In general, how is your health now?
Framingham Cohort	phv00251759	SF-12 Health Survey (Standard) Self-administered: In general, would you say your health is:
Framingham Cohort	phv00254818	Socio-demographics: In general, how is your health now
Genetic Epidemiology of COPD (COPDGene)	phv00159602	Health status
Genome Wide Association Study of Chronic TMD: Discovery Phase	phv00260991	SF12 1. In general, would you say your health is:
Jackson Heart Study (JHS) Cohort	phv00128086	1: Health comparable to others
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085869	IN GENERAL YOUR HEALTH IS
OPPERA prospective cohort study of first-onset TMJD	phv00224813	SF12 General health
Orofacial Pain: Prospective Evaluation and Risk Assessment (OPPERA). Baseline case-control study of chronic temporomandibular disorder	phv00223752	SF12 General health
The Detroit Neighborhood Health Study (DNHS)	phv00174466	Would you say that in general your health is: [READ CHOICES]
Women's Health Initiative	phv00078931	In general, health is
Women's Health Initiative	phv00078931	In general, health is
Women's Health Initiative	phv00079091	In general, health is
Women's Health Initiative	phv00079091	In general, health is
Women's Health Initiative	phv00111629	In general, health is
Women's Health Initiative	phv00111629	In general, health is
Women's Health Initiative	phv00169481	In general, health is
Women's Health Initiative	phv00169481	In general, health is
Women's Health Initiative	phv00192308	In general, health is
Women's Health Initiative	phv00192308	In general, health is

Mapping for PX110901_Macular_Degeneration_Number_Brothers_Coded

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Cardiovascular Health Study (CHS) Cohort	phv00101839	Difficulty driving at night
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085853	NO DRIVING AT NIGHT DUE TO VISION
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00085854	DIFFICULTY SEEING THINGS WHEN DRIVING AT NIGHT

Mapping for PX110901_Macular_Degeneration_Number_Fathers_Brothers_Coded

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

Mapping for PX110901_Macular_Degeneration_Number_Sisters_Coded

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Cardiovascular Health Study (CHS) Cohort	phv00100357	SEE ENOUGH TO DRIVE
Cardiovascular Health Study (CHS) Cohort	phv00101613	SEE WELL ENOUGH TO DRIVE
Cardiovascular Health Study (CHS) Cohort	phv00102793	SEE WELL ENOUGH TO DRIVE
Cardiovascular Health Study (CHS) Cohort	phv00104293	SEE WELL ENOUGH TO DRIVE
Cardiovascular Health Study (CHS) Cohort	phv00104910	SEE WELL ENOUGH TO DRIVE
Cardiovascular Health Study (CHS) Cohort	phv00107220	SEE WELL ENOUGH TO DRIVE
Cardiovascular Health Study (CHS) Cohort	phv00108084	SEE WELL ENOUGH TO DRIVE
Cardiovascular Health Study (CHS) Cohort	phv00108726	SEE WELL ENOUGH TO DRIVE
Cardiovascular Health Study (CHS) Cohort	phv00110122	SEE WELL ENOUGH TO DRIVE

Mapping for PX110901_Macular_Degeneration_Other_Relative

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Cardiovascular Health Study (CHS) Cohort	phv00101837	Do you currently drive a car?
Framingham Cohort	phv00003722	DO YOU DRIVE?
Framingham Cohort	phv00004140	DO YOU DRIVE?
Framingham Cohort	phv00004577	ACTIVITIES-DO YOU DRIVE NOW?
Framingham Cohort	phv00005352	ACTIVITIES-DO YOU DRIVE?
Framingham Cohort	phv00005990	ACTIVITIES-DO YOU DRIVE NOW?
Framingham Cohort	phv00006080	DO YOU DRIVE?
Framingham Cohort	phv00006398	ROSOW-BRESLAU - DO YOU DRIVE
Framingham Cohort	phv00006754	ROSOW-BRESLAU: DO YOU DRIVE?
Framingham Cohort	phv00007206	ROSOW-BRESLAU: DO YOU DRIVE?
Framingham Cohort	phv00009153	ACTIVITIES-DO YOU DRIVE NOW?
Framingham Cohort	phv00009629	DO YOU DRIVE NOW
Framingham Cohort	phv00010570	ROSOW-BRESLAU: DO YOU DRIVE NOW
Framingham Cohort	phv00056703	Does participant drive
Framingham Cohort	phv00070652	ROSOW-BRESLAU: DO YOU DRIVE?

Protocol - Personal and Family History of Eye Disease and Treatments

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