National Survey of Health and Development - JPND Neurodegenerative Disease Research

Title of the cohort

National Survey of Health and Development

Acronym for cohort

NSHD

Name of Principal Investigator

Title	Professor
First name	Diana
Last name	Kuh

Address of institution where award is held

Institution	MRC Unit of Lifelong Health and Ageing
Street Address	33 Bedford Place
City	London
Postcode	WC1B 5JU

Country

United Kingdom

Website

www.nshd.mrc.ac.uk/

Contact email

[email protected]

Funding source

Core funding from Medical Research Council

1. The cohort includes, or expects to include, incidence of the following conditions

Alzheimer’s disease and other dementias
Neurodegenerative disease in general

When studies on the above condition(s) are expected to become possible

Already possible

2a. Stated aim of the cohort

Now, as participants reach retirement, the research team is developing the NSHD into a life course study of ageing.

2b. Features distinguishing this cohort from other population cohorts

3a. i) Number of publications that involve use of cohort to date

650

3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)

3b. Publication list/link to where data or publications are accessible (if available)

http://www.nshd.mrc.ac.uk/findings/publications.aspx http://www.nshd.mrc.ac.uk/research.aspx

3c. Information (i.e. research findings) expected to be gained from the population cohort

4a. Study criteria: age range of participants at recruitment

Age in years from:	birth
To (‘until death’ if applicable):	until death

4b. Study criteria: inclusion criteria

A sample of 5362 babies of all those borm in one week of March 1946

4c. Study criteria: exclusion criteria

illegimate babies

5. Size of the cohort (i.e. number of participants enrolled)

5,001 – 10,000 participants

6a. Measures used to characterise participants

Particpants have been followed up at two and four years between 6 and 31 years there were 15 follow ups research nurses visited study memebrs at 36,43,53 at 43 and 53 cognitive capability tests were included at 53 tests of physical capability were included between 47 and 54 and again at 57 women were senr questionnaires to obtain information about timing of the menopause 60-64 physical and cognitive capability and ageing of cardiovascular and musculoskeletal body systems

6b. Additional measures for participants with a clinical disorder

6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)

death

7. Study design

Longitudinal

8. Cases matched by

9a. Does the study include a specialised subset of control participants

9b. If yes, description of specialised subset of control participants

10a. i) Data collection start date

03-03-1946

10a. ii) Data collection end date

03-03-2046

10a iii) Data collection for this study is

Data analysis ongoing
Closed to new patients

10b. Plans to continue the cohort study beyond the current projected end date

Yes – intend to apply for funding

11. Data collected

Only through the study
Through links to medical records
Through links to other records or registers (such as dental records, police records etc). Please specify
ONS deaths and cancers, Census 1951,1971,2001

12. System in place to enable re-contact with patients for future studies

13a. Format and availability of data stored in a database

	Yes/No	% available
Data summarised in database	yes	100
Database is web-based
Database on spreadsheet
Database is on paper
Other (specify)

Language used:

13b. Format and availability of data held as individual records

	Yes/No	% available
Data held as individual records
Data is web-based
Data held on computer based records	yes	100
Data held on cards
Other (specify)

Language used:

14a. Are data available to other groups

Yes

14b. Access policy/mechanisms for access if data are available to other groups

Access Committee mechanism

15. Data sharing policy specified as a condition of use

Data made publicly available after a specified time point

16a. Are tissues/samples/DNA available to other groups

Yes

16b. i) Description of available tissues/samples/DNA

Living donors:blood
Living donors: DNA

16b. ii) Form available tissues/samples/DNA are supplied in

Primary Samples: Stabilised samples (frozen or fixed)
Secondary samples: plasma
Secondary samples: cell lines derived from primary samples
Composite samples: chip for a particular ND condition

16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data

Yes

17. Is information on biological characteristics available to other groups

Yes, for all the cohort