Title of the cohort
Hertfordshire Birth Cohort
Acronym for cohort
Name of Principal Investigator
| Title | Professor |
| First name | Cyrus |
| Last name | Cooper |
Address of institution where award is held
| Institution | MRC Lifecourse Epidemiology Unit |
| Street Address | Southampton General Hospital |
| City | Southampton |
| Postcode | SO16 6YD |
Country
United Kingdom
Website
www.mrc.soton.ac.uk
Contact email
Funding source
Medical Research Council
University of Southampton
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
Already possible
2a. Stated aim of the cohort
To investigate the role of early growth in the development of adult disease
2b. Features distinguishing this cohort from other population cohorts
The availability of data on birthweight and weight at one year in people born from 1911-39
3a. i) Number of publications that involve use of cohort to date
0
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.mrc.soton.ac.uk/index.asp?page=3
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: | recruited at birth |
| To (‘until death’ if applicable): | until death |
4b. Study criteria: inclusion criteria
Born in Hertfordshire 1911-39
birthweight and weight at one stated
singleton birth
traced on NHS central register
4c. Study criteria: exclusion criteria
Not the above
5. Size of the cohort (i.e. number of participants enrolled)
More than 15,000
6a. Measures used to characterise participants
Birthweight
Weight at one year
Cause of death
Detailed clinical characterisation of subset (C4000)
6b. Additional measures for participants with a clinical disorder
No
6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)
Death
7. Study design
- Longitudinal
8. Cases matched by
- Other health assessment (specify) / N/A
- n/a
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
01-01-1911
10a. ii) Data collection end date
31-12-2039
10a iii) Data collection for this study is
- Data collection ongoing
- Data analysis ongoing
10b. Plans to continue the cohort study beyond the current projected end date
- No
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 | No | |
| Other (specify) | Yes |
Language used:
Stored in Access Database
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 | Yes | |
| Data held on cards | No | |
| 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
No requirement to make data publicly available
16a. Are tissues/samples/DNA available to other groups
Yes
16b. i) Description of available tissues/samples/DNA
- Living donors:blood
- Living donors: blood derivatives
- Living donors: DNA
- Living donors: skeletal muscle biopsy
- Other, please specify
- Above samples stored from a subset (C4000), some of whom have since died
16b. ii) Form available tissues/samples/DNA are supplied in
- Other, please specify
- By negotiation
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
- If available for a subset please specify number of patients and % of total cohort
- 4000/35,000 = 11%