Working with the Medical Research Council

Article dated: 14 December 2005

UKDA is currently undertaking two contracts with the Medical Research Council (MRC) to assist in plans for data sharing and preservation. The MRC has recently adopted a policy which encourages data sharing to be considered the norm, and requires MRC grantholders to produce data sharing and preservation plans to demonstrate their commitment by making appropriate provision for any data they collect or create.

To facilitate this, the UKDA is undertaking to produce, in partnership with MRC, three Guides to Good Practice to assist MRC grantholders in population-based research studies with their data sharing and preservation activities. The first will include guidance for those writing and evaluating data sharing and preservation plans, and will touch on issues such as rights management frameworks, confidentiality and consent, copyright and intellectual property, and data protection and Freedom of Information legislation. The second will cover best practice in data preservation and curation, and the third will cover data management issues for medical scientists in the population-based research studies areas. The guides will be freely downloadable.

The UKDA is also undertaking a data audit of two major longitudinal investments by MRC: the National Study of Health and Development (aka the 1946 Birth Cohort Study) and the Avon Longitudinal Study of Parents and Children (ALSPAC). This is in preparation for improved access for secondary users. This will result in a report which will inform the MRC’s strategic decisions around Data Sharing and Preservation for these two important studies.