Introduction to 1958 Birth Cohort
The 1958 Birth Cohort, or National Child Development Study, makes resources available to research scientists (biomedical, psychosocial, educational or ethico-legal) from anywhere in the world that have successfully applied to the METADAC committee or the Consortium Data Access Committee (CDAC). Restrictions for the commercial use of the 1958 BC resource are currently in place.
The resource is used widely for:
– research in genetic and genomic epidemiology, in particular as a platform for genetic association studies.
– providing a source of subjects that have been well characterised (phenotyped) for a variety of quantitative complex traits and have also been assessed for a variety of socio-demographic, socio-economic and life style variables that are outcomes in their own right, and may be important determinants in relevant causal pathways leading to disease
– providing a source of ‘cases’ and ‘controls’ for common binary traits
– providing a geographically representative sample of British people (of primarily European origin) that represents the premier source of national controls that can be used in a wide variety of genetic case-control studies
Social Studies and Biomedical Data
Details of available data in the social studies resource are outlined by the UK Data Service or can be found in the Online Data Dictionary.
There are over 16,000 NCDS variables in the nine full sweeps (plus the exams data), with biomedical data added in 2002-2004. The online data dictionary is a searchable database containing a ‘record’ for every variable in all the main sweeps since birth. It is structured to reflect the data collection by subject within questionnaire / instrument and is also searchable using free text search. The exact question wording corresponding to each variable is shown, and you can get frequency counts for each value.
Governance and Access
Access to this data is supervised by the Centre for Longitudinal Studies (CLS), providing controlled access via the UK Data Service. All applications are reported to the CLS Strategic Advisory Board.
Data requests that are not straightforward will be referred by CLS to the METADAC to discuss and adjudicate.
- Particularly sensitive or disclosive data – such as fine level geography, and biomedical survey data (biodata) – are only available under a special licence. ‘Special licence’ datasets require additional oversight, and advice on obtaining a special licence is available from CLS.
- Data can be accessed by registering with the UK Data Service, University of Essex. Registration involves the Athens Authentication System. If users are attached to an academic institution in the UK, they will already have an Athens user account and their ID and password for that can be used to register.
- Registered users are able to download data upon agreement to the access conditions specified in an end user licence and upon registration of usage details.
- Data can be linked between different sweeps – see the ‘linked data’ section below if you are interested in combining different types of 1958 data.
Active guidance on the availability and use of these data is provided by the Centre for Longitudinal Studies (CLS) at firstname.lastname@example.org
Details of the GWA and exome sequencing datasets generated from the 1958BC are available from the European Genome-phenome Archive and are summarised in table below.
Click on the sample sizes shown in the summary table to be transferred to the EGA site for that dataset.
|Chip or Assay Used: \ Study Controls:||||||||||||||HLA||[tbc]|
|Infinium HumanHap 550K v3||1436*||2604|
|Illumina 15K Custom chip||1504|
|Illumina HumanEXome-12v1_A-GenCall, zCall||5841|
|Illumina Human 610-Quad||0|
|Illumina ImmunoBeadShip – Illuminus, GenoSNP||6812|
|Dynal RELI SSO assay||6662|
|Illumina HiSeq 2500||1000|
Key to Study Controls 1-6:
EGA study reference & further information:
 WTCCC1: Welcome Trust Case control Consortium 1
 WTCCC2: Welcome Trust Case Control Consortium 2
 T1DGC: Type 1 Diabetes Genetics Consortium
 GABRIEL: Large-Scale Genome-Wide Association Study of Asthma
 METABOCHIP: Association Studies using the metabochip array
 IMMUNOCHIP: Coeliac Disease Immunochip dataset
Application and Access (GWA data)
- Access to the GWA data sets are made by application to the Consortium Data Access Committee (CDAC) of the Wellcome Trust Case Control Consortium. The CDAC is formally convened by Wellcome Trust, under a secretariat led by Dr Audrey Duncanson.
- CDAC only authorises access to anonymised genotypes, judgement is based solely on application review criteria 1-5. If applicants request anything beyond the anonymised genotypes from the GWA scans detailed in the table above, they are necessarily referred on to the ACCC directly. Similarly, if concerns are raised under criteria 1-5 but the CDAC does not feel that the concerns are severe enough to warrant outright rejection, the application will be discussed with the Chair of ACCC and if necessary referred on to that committee for formal review.
- Where applicants require access solely to the GWA data overseen by the European Genome-phenome Archive, the applicant signs off on the conditions implied by the acceptance documentation required by CDAC data access agreement. All of these documents indicating access to data or biosamples include a non-negotiable requirement to return new scientific data (e.g. genotypes, or new variables) to a central 1958BC scientific archive to be held at Bristol, which will increase the value of the 1958BC resource to the scientific community as a whole.
Application and Access (Genetic data other than GWA)
- Access to genetic data not covered in the GWA paragraph above is by application to METADAC.
- METADAC assess the application according to published application criteria.
- For further information on applying to METADAC for the 1958BC genetic resource see the METADAC application documentation for 1958BC, or contact email@example.com.
- All 1958BC applications are reported to the Centre for Longitudinal Studies Strategic Advisory Board (CLS SAB).
DNA and Biospecimens
The active repositories of native and cell line DNA, and the cell-lines themselves are stored in freezers and cryostores in the ALSPAC laboratories, University of Bristol under the management of Dr Sue Ring. The cell lines are backed up by an inactive archive (not accessed to supply users) held at the European Collection of Cell Culture within the Health Protection Agency Centre for Emergency Preparedness at Porton Down, Wiltshire. Access to all DNA samples is overseen by the METADAC committee (see details below).
This comprises biomedical samples (whole blood, plasma and saliva) collected in the 2003 biomedical survey. All access is overseen by the METADAC committee.
Biochemical data already available from the biosamples includes the following markers:
- C reactive protein
- HDL cholesterol
- IGF Specific IgE
- T cholesterol
- Total IgE
- Tissue Plasminogen Activator
- Von Willebrand Factor
- Serum 25-Hydroxyvitamin D
Governance and Access
DNA and biospecimens can be accessed by application to METADAC on the 1958BC application form.
- Guidance is available in the 1958 documentation, from CLS or from the METADAC Secretariat.
- There is currently an open call for use of the biospecimen resource.
- Once an application is approved, a Material Transfer Agreement (MTA) must be signed. It may be worth checking the example MTA with your legal team in advance.
- Samples (e.g. DNA plates) are prepared by University of Bristol and shipped to researchers.
- All applications are reported to the CLS Strategic Advisory Board.
Linkage of data from the 1958BC resources has been available since 2010 and is released under project-specific linkage keys. When users wish to access more than one type of 1958BC study data, this can potentially increase the disclosure risk. Such applications demand careful linkage of the relevant data that are required so as to enable secure analysis at an individual level.
A summary of data that can be linked by CLS without cooperation by University of Bristol:
A summary of data that can be linked by University of Bristol without cooperation by CLS:
When genetic and phenotypic information (other than gender and broad geographical area) are linked for analysis, the METADAC has oversight of the application.
Application and Access
- Linked resources can be applied for using the 1958BC METADAC application form, following the 1958 application guidance notes.
- Once an application is approved, a Data Transfer Agreement must be signed, and a Material Transfer Agreement for applications using DNA or biosamples).
- Study-specific linkage keys (identifiers) are generated by CLS, so that access can be provided co-operatively by CLS, University of Bristol and the EGA.
- All applications are notified to the Centre for Longitudinal Studies Strategic Advisory Board (CLS SAB).