Cohort – TwinsUK

Title of the cohort
Cohort – TwinsUK
Acronym for cohort
TUK
Name of Principal Investigator

Title	Prof
First name	Tim
Last name	Spector

Address of institution where award is held

Institution	Dep. of Twin Research & Genetic Epidemiology
Street Address	Westminster Bridge Road
City	London
Postcode	SE1 7EH

Country
United Kingdom
Website
http://www.twin-research.ac.uk/
Contact email
[email protected]
Funding source
The main funding bodies currently supporting TwinsUK are the Wellcome Trust, European Union (EU), and National Institute for Health Research (NIHR)
1. The cohort includes, or expects to include, incidence of the following conditions

• Alzheimer’s disease and other dementias
• Parkinson’s disease

When studies on the above condition(s) are expected to become possible
Already possible
2a. Stated aim of the cohort
The TwinsUK is an adult twin British registry shown to be representative of the United Kingdom population
2b. Features distinguishing this cohort from other population cohorts
Healthy Twins cohort
3a. i) Number of publications that involve use of cohort to date
600
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.twin-research.ac.uk/publications.html
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:	18
To (‘until death’ if applicable):	until death (or retirement from the study)

4b. Study criteria: inclusion criteria
No inclusion criteria
4c. Study criteria: exclusion criteria
No exclusion criteria
5. Size of the cohort (i.e. number of participants enrolled)
10,001 – 15,000 participants
6a. Measures used to characterise participants
Clinical visit and questionnaire
6b. Additional measures for participants with a clinical disorder
No
6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)
No
7. Study design

• Prospective cohort

8. Cases matched by

• Other health assessment (specify) / N/A
• no match

9a. Does the study include a specialised subset of control participants
No
9b. If yes, description of specialised subset of control participants

10a. i) Data collection start date
01-01-1992
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 – intend to apply for funding

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	Yes
Database is web-based	no
Database on spreadsheet	no
Database is on paper	no
Other (specify)

Language used:
English
13b. Format and availability of data held as individual records

	Yes/No	% available
Data held as individual records	yes
Data is web-based	no
Data held on computer based records	yes
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
• Access Committee mechanism
• Resource has own ethics approval so usually no need for separate external ethics approval

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
No
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
Yes
17. Is information on biological characteristics available to other groups

Cohort – TwinsUK

Population Cohorts
United Kingdom
Alzheimer’s disease & other dementias|Parkinson’s disease & PD-related disorders