Boyd Orr Cohort - JPND Neurodegenerative Disease Research

Title of the cohort

Boyd Orr Cohort

Acronym for cohort

Name of Principal Investigator

Title	Prof
First name	Richard
Last name	Martin

Address of institution where award is held

Institution	University of Bristol
Street Address	39 Whatley Rd
City	Bristol
Postcode	BS8 2PS

Country

United Kingdom

Website

http://www.epi.bris.ac.uk/boydorr/

Contact email

[email protected]

Funding source

The Medical Research Council, the World Cancer Research Fund, Research into Ageing, United Kingdom Survivors, the Economic and Social Research Council, the Wellcome Trust, and the British Heart Foundation.

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

Alzheimer’s disease and other dementias

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

Already possible

2a. Stated aim of the cohort

To investigate the long-term impact of environmental factors in early life on adult chronic disease and function

2b. Features distinguishing this cohort from other population cohorts

detailed records of diet and health in 1930s related to adult health and function

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

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

See BO cohort profile in International Journal of Epidemiology doi:10.1093/ije/dyi124

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

See BO cohort profile in International Journal of Epidemiology doi:10.1093/ije/dyi124

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:	0-19
To (‘until death’ if applicable):	death

4b. Study criteria: inclusion criteria

living in selected areas in 16 centres accross the UK

4c. Study criteria: exclusion criteria

none

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

1,000 – 5,000 participants

6a. Measures used to characterise participants

See BO cohort profile in International Journal of Epidemiology doi:10.1093/ije/dyi124

6b. Additional measures for participants with a clinical disorder

See BO cohort profile in International Journal of Epidemiology doi:10.1093/ije/dyi124

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

7. Study design

Retrospective cohort

8. Cases matched by

Other health assessment (specify) / N/A
None

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

Yes

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

See BO cohort profile in International Journal of Epidemiology doi:10.1093/ije/dyi124

10a. i) Data collection start date

01-01-1937

10a. ii) Data collection end date

13-07-2011

10a iii) Data collection for this study is

Data collection ongoing
Closed to new patients

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

11. Data collected

Through links to medical records

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

Yes (participants have given permission to be re-contacted via the PIs to ask if they would participate in further studies)

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

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

Language used:

english

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

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

Language used:

english

14a. Are data available to other groups

Yes

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

Apply to PI or co-ordinator at resource

15. Data sharing policy specified as a condition of use

No policy exists

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

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

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

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

17. Is information on biological characteristics available to other groups

If available for a subset please specify number of patients and % of total cohort
10