Protocol - Family History of Dementia and Longevity

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. The interviewer should be trained to prompt respondents further if a "dont know" response is provided.

Equipment Needs

The PhenX Working Group acknowledges that these questions can be administered in a computerized or noncomputerized format (i.e., paper-and-pencil 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, Senior

Participants

Adults over 50 years of age in the United States

Selection Rationale

The Health and Retirement Study is longitudinal survey of a representative sample of Americans over 50 years of age. The study has more than 3,000 publications to date. These questions capture the important data about longevity and dementia status of the parents of an individual.

Language

English

Standards

Standard	Name	ID	Source
Human Phenotype Ontology	Dementia	HP:0000726	HPO
caDSR Form	PhenX PX250801 - Family History Of Dementia And Longevity	6913130	caDSR Form

Derived Variables

None

Process and Review

Not applicable.

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Protocol Name from Source

National Institute on Aging (NIA), Health and Retirement Study, Family History of Dementia and Longevity, 2016

Source

National Institute on Aging Health and Retirement Study. Family History of Dementia and Longevity 2016, Section F: Questions F233, F234, F006, F007, F008, F235, F236, F016, F017, F018.

General References

Ostergren, J.E., Heeringa, S.G., de Leon, C.F., Mendes, Connell C.M., Roberts, J.S. (2017). The influence of psychosocial and cognitive factors on perceived threat of Alzheimers Disease. American Journal of Alzheimers Disease & Other Dementias. 32(5):289-299.

Yashin, A.I., Fang, F., Kovtun, M., et al. (2018). Hidden heterogeneity in Alzheimers disease: Insights from genetic association studies and other analyses. Experimental Gerontology. 107:148-160.

Protocol ID

250801

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX250801_Father_Age_Died
	PX250801060102	About how old was he when he (died/passed more away)? [IWER: PROBE IF NECESSARY] show less	N/A
PX250801_Father_Age_Died_Specific
	PX250801060101	About how old was he when he (died/passed more away)? [IWER: PROBE IF NECESSARY] AGE _____ show less	N/A
PX250801_Father_History_Alzheimers
	PX250801040000	Has a doctor ever told your father that he more has Alzheimer's Disease? DEF: (Medical doctors include specialists such as Neurologists, Dermatologists, Psychiatrists, Ophthalmologists, Osteopaths, Cardiologists, as well as family doctors, internists an show less	N/A
PX250801_Father_History_Dementia
	PX250801050000	Has a doctor ever told your father that he more has dementia, senility or any other serious memory impairment? DEF: (Medical doctors include specialists such as Neurologists, Dermatologists, Psychiatrists, Ophthalmologists, Osteopaths, Cardiologists, as w show less	N/A
PX250801_Father_Month_Died
	PX250801060202	In what month and year did he (die/pass away)?	N/A
PX250801_Father_Month_Died_Specific
	PX250801060201	In what month and year did he (die/pass more away)? MONTH________ show less	N/A
PX250801_Father_Year_Died
	PX250801060204	In what month and year did he (die/pass away)?	N/A
PX250801_Father_Year_Died_Specific
	PX250801060203	In what month and year did he (die/pass more away)? YEAR______ show less	N/A
PX250801_Mother_Age_Died
	PX250801030102	About how old was she when she (died/passed more away)? [IINTERVIEWER: PROBE IF NECESSARY] show less	N/A
PX250801_Mother_Age_Died_Specific
	PX250801030101	About how old was she when she (died/passed more away)? [IINTERVIEWER: PROBE IF NECESSARY] AGE ________ (go to question 3b) show less	N/A
PX250801_Mother_History_Alzheimers
	PX250801010000	Has a doctor ever told your mother that she more has Alzheimer's Disease? DEF: (Medical doctors include specialists such as Neurologists, Dermatologists, Psychiatrists, Ophthalmologists, Osteopaths, Cardiologists, as well as family doctors, internists a show less	N/A
PX250801_Mother_History_Dementia
	PX250801020000	Has a doctor ever told your mother that she more has dementia, senility or any other serious memory impairment? DEF: (Medical doctors include specialists such as Neurologists, Dermatologists, Psychiatrists, Ophthalmologists, Osteopaths, Cardiologists, as show less	N/A
PX250801_Mother_Month_Died
	PX250801030202	In what month and year did she (die/pass away)?	N/A
PX250801_Mother_Month_Died_Specific
	PX250801030201	In what month and year did she (die/pass more away)? MONTH __________ show less	N/A
PX250801_Mother_Year_Died
	PX250801030204	In what month and year did she (die/pass away)?	N/A
PX250801_Mother_Year_Died_Specific
	PX250801030203	In what month and year did she (die/pass more away)? YEAR __________ show less	N/A

Geriatrics

Measure Name

Family History of Dementia and Longevity

Release Date

July 2, 2018

Definition

Questionnaire obtaining history of diagnosis of dementia and Alzheimer's Disease in an individual's mother and father.

Purpose

Both dementia and longevity exhibit some degree of heritability, so information on maternal and paternal history is important to an individual.

Keywords

Alzheimers Disease, dementia, Memory Impairment, Senility, Health and Retirement Study, National Institute on Aging, NIA, gerontology, aging

Measure Protocols

Protocol ID	Protocol Name
250801	Family History of Dementia and Longevity

Publications

There are no publications listed for this protocol.