The Cambridge City over-75s Cohort Study - JPND Neurodegenerative Disease Research

Title of the cohort

The Cambridge City over-75s Cohort Study

Acronym for cohort

CC75C

Name of Principal Investigator

Title	Prof
First name	Carol
Last name	Brayne

Address of institution where award is held

Institution	Institute of Public Health, University of Cambridge
Street Address	Robinson Way
City	Cambridge
Postcode	CB2 0SR

Country

United Kingdom

Website

http://www.cc75c.group.cam.ac.uk/

Contact email

[email protected]

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

CC75C is a long-term follow-up study of a representative population-based sample of older people which started in 1985 from a survey of over 2,600 men and women aged 75 and above

2b. Features distinguishing this cohort from other population cohorts

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)

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

http://www.cc75c.group.cam.ac.uk/pages/journals/default.htm

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:
To (‘until death’ if applicable):	no limit

4b. Study criteria: inclusion criteria

4c. Study criteria: exclusion criteria

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

1,000 – 5,000 participants

6a. Measures used to characterise participants

The core data set comprises data collected from the main surveys to date using the CC75C structured schedule administered by trained interviewers. This provides longitudinal data on socio-demographic variables (e.g. place of residence, household structure, marital status and social contact), activities of daily living, use of health and social service, health problems and medication. The interview schedule has undergone slight revisions over the years with the addition of new sections, such as questions on service use added in Survey 3, but maintaining continuity of core measures has remained a priority. The CC75C study also holds other data resources collected at different periods in the study to examine specific topics of importance in ageing research.

6b. Additional measures for participants with a clinical disorder

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

7. Study design

Longitudinal
Prospective cohort

8. Cases matched by

Other health assessment (specify) / N/A

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

01-04-1985

10a. ii) Data collection end date

10a iii) Data collection for this study is

Data collection ongoing

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

Yes – funding applied for

11. Data collected

Only through the study

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
Database is web-based
Database on spreadsheet	Yes, in STATA
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	Yes
Data is web-based
Data held on computer based records	Yes
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

Apply to PI or co-ordinator at resource
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
Post-mortem donors: brain

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

Primary Samples: Stabilised samples (frozen or fixed)
Secondary samples: plasma
Secondary samples: DNA
Secondary samples: RNA
Secondary samples: protein extracts

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