Northern Ireland Study of Health and Stress - JPND Neurodegenerative Disease Research

Title of the cohort

Northern Ireland Study of Health and Stress

Acronym for cohort

NISHS

Name of Principal Investigator

Title	Professor
First name	Brendan
Last name	Bunting

Address of institution where award is held

Institution	University of Ulster
Street Address	College Avenue
City	L’Derry
Postcode	BT48 7JL

Country

United Kingdom

Website

www.science.ulster.ac.uk/research/psychology/nishs/ –

Contact email

[email protected]

Funding source

Public Health Agency for Northern Ireland, Research and Development Office

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

Neurodegenerative disease in general

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

2a. Stated aim of the cohort

To establish the prevalence and correlates of mental health using DSM and ICD criteria.

2b. Features distinguishing this cohort from other population cohorts

Unique within Northern Ireland, but linked to similar datasets in other countries.

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)

1. Ferry, F., Bolton, D., Bunting, B., Devine, B., McCann, S. & Murphy, S. (2008). Trauma, Health and Conflict in Northern Ireland. ISBN 978-1-85923-228-6.

2. Kessler et al (in press). Treated and untreated prevalence of mental disorders: Results from the World Health Organization World Mental Health (WMH) Surveys. Oxford Textbook of Community Mental Health and edited by Professor Graham Thornicroft, Professor George Szmukler, Dr Kim Mueser, and Dr Robert Drake. Oxford Press.

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

Prevalence, severity, comorbidity, age-of-onset, service use, failure and delays in treatment and dropout from treatment services, based on 30 days, 12 months, and lifetime.

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

Age in years from:	18+ years
To (‘until death’ if applicable):

4b. Study criteria: inclusion criteria

Individuals living in the community

4c. Study criteria: exclusion criteria

Non-institutionalised.

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

1,000 – 5,000 participants

6a. Measures used to characterise participants

DSM and ICD criteria as evaluated using the CIDI.

6b. Additional measures for participants with a clinical disorder

Yes.

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

7. Study design

Cross sectional survey

8. Cases matched by

Co-morbidities

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

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

One hundred percent of those who sceened for a condition were included in the long form of the interview, as were 50% of those meeting a ‘subthreshold’ core disorder, and 25% of the remaining sample.

10a. i) Data collection start date

02-02-2004

10a. ii) Data collection end date

30-05-2008

10a iii) Data collection for this study is

Closed to new patients

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	Yes
Database is web-based
Database on spreadsheet	Yes
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
Data is web-based
Data held on computer based records	Yes
Data held on cards
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

Access through collaboration with PI only

15. Data sharing policy specified as a condition of use

No requirement to make data publicly available

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