METADAC considers complex issues for biomedical data access for four longitudinal (cohort) studies. When you need just GWAS genetic data or phenotype data (not both together), your application will not normally need to be considered by the METADAC, and you can follow the links below to the studies’ information on data access.
Epigenetic data (without phenotype data) is available in Understanding Society without applying to METADAC; but epigenetic data from 1958 Birth Cohort currently does require a METADAC application.
- The English Longitudinal Study of Ageing (ELSA)
- Understanding Society – The UK Household Longitudinal Study (including BHPS)
- 1958 Birth Cohort (National Child Development Study)
- 1970 British Cohort Study
- Millennium Cohort Study
METADAC is the access committee which approves access
The individual cohorts are responsible for everything that happens after access has been approved. So:
- 1958bc data comes from the 58FORWARDS team in Newcastle; samples from 58FORWARDS team in Bristol
- ELSA data from ELSA team
- Understanding Society data from the Understanding Society team
- Millennium genetics data is not yet available for release and 1970 have not generated any yet (except for a small amount of epigenetics data)
- Incidental findings must be notified to METADAC but any individual findings are to be returned to studies as above.
Any queries on the data itself should be addressed with the relevant study team.
Application types processed by METADAC
Please apply to the METADAC when:-
- You require genetic data linked with other information
- You are applying for use of biological samples
- You are applying for exome sequencing data (fastq or vcf file-types, even when not linked with other information).
- You are applying for epigenetic data from the 1958 Birth Cohort (even when not linked with other information).
For all these types of application, please use the METADAC application forms and guidance. If possible please return the forms well before the next Committee deadline.
Governance routes for different types of application
|– – – – – – – – – – – – – – – – – – – – – – CLS Studies – – – – – – – – – – – – – – – – – – – – – –|
|Non-genetic: Social/Survey/ Medical data only||UK Data Service series 200011||UK Data Service series 2000053||UK Data Service series 2000032||UK Data Service series 200001||UK Data Service series 2000031|
|Genetic Data only; approval notified to EGA for issue.||Contact ELSA for ELSA genetic data.||See UKHLS web-page.||Most datasets: WTCCC||n/a||n/a|
|Exome Sequence datasets: METADAC|
|Linked genetic and other (phenotype) data||METADAC||METADAC||METADAC||n/a||n/a|
|Bio-medical Samples (with or without other data)||(Not available)||METADAC
(Not yet available, see UKHLS pages)
(Not yet available.)
|Supporting information for METADAC applications||Contact firstname.lastname@example.org||UKHLS documentation||1958 documentation||1970 documentation||Millennium documentation|
Dr Stephanie Roberts, Head of METADAC Secretariat