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Resources

Relevant resources on data management and sharing, policies and guidance

Establishment

Resource

Cancer Research UK

Cancer Research UK policy focuses on achieving “maximum use by the cancer research community and, whenever possible, is translated to deliver patient benefit”. The CRUK website refers specifically to NCRI Informatics Initiative for guidance on data-sharing, databases and data standards.

Digital Curation Centre

The DCC provides a national focus for research and development into digital curation issues and promotes expertise and good practice, both national and international, for the management of all research outputs in digital format. Working with other practitioners, the DCC supports UK institutions that store, manage and preserve these data to help ensure their enhancement and their continuing long-term use.

Economic and Social Research Council

The ESRC data policy sets out requirements and guidance for researchers and is accompanied by a useful guide on Data Management Plans for peer reviewers.

National Cancer Research Institute Informatics initiative

The NCRI Informatics initiative website provides several valuable resources for researchers, including information on data standards applicable to both cancer research and more broadly.

The NCRI has created a flexible template for access policy development, which can be tailored to the needs of a specific collection of data or samples. The resource also provides a template Data and Material Transfer Agreement.

National Institute for Health Research

NIHR funding programmes refer to MRC and the NCRI Informatics Initiative for data-sharing policies and practice.

The NIHR Research Capability Programme focuses on research access to quality patient data.

Research Information Network

The Research Information Network was set up in 2005 by the four UK higher education funding bodies, the seven research councils and the three national libraries. The RIN's role is to enhance and broaden understanding of the information resources and services available to researchers and how they use them. It also promotes innovation and development of effective policies and strategies for the benefit of the UK research community.

UK Data Archive - Managing and Sharing Data

The UK Data Archive provides online guidance and resources for researchers on best practice in managing and sharing data.

Europe PubMed Central (Europe PMC)

Europe PMC is a free online resource for biomedical and health researchers offering access to published research outputs. Other funders include BBSRC, The Wellcome Trust, NIHR, the European Research Council and the devolved administrations and medical charities.

USA National Institutes of Health

The NIH data sharing policy details requirements, including applicants seeking $500,000 or more in direct costs in any one year, to provide a data-sharing plan in their grant application.

Wellcome Trust Guidance

The Wellcome Trust Guidance for Researchers on Developing a Data Management and Sharing Plan is intended to assist all applicants to the Trust in developing effective and proportionate approaches to maximise the value of their research data. The guidance sets out the circumstances under which data management and sharing plans are required and our expectations addressing issues in these plans.

Wellcome Trust Sanger Institute Data-sharing guidance

The Wellcome Trust Sanger Institute has a policy setting out the principles that underlie data-sharing at the Institute with an associated guidance document for researchers.

University of Cambridge

The University provides a simple guide to creating, organising, accessing and looking after research data.

Dspace@Cambridge is the institutional repository of the University of Cambridge.

University College London

The UCL Information Services Division website publishes suites of information and guidance, e.g. on UCL data security policies.

The University provides a set of links to funders’ policies and sources of expertise.

University of Glasgow

The University provides a set of links to funders’ policies and sources of expertise.

University of Oxford

The University of Oxford publishes a suite of advice starting with “Why manage your data” and includes useful guides to data management and data-sharing.

University of Edinburgh

The University provides its researchers with resources for managing research data

 

Data sharing reports

Lowrance, W.W. 2006. Access to Collections of Data and Materials for Health Research - A Report to the Medical Research Council and the Wellcome Trust

  • Report on issues surrounding research access to population-based collections of data and materials in the UK, commissioned by the MRC and the Wellcome Trust. The report considers consent and confidentiality concerns, scientific concerns, proprietary concerns, issues of decision authority and oversight, and practical aspects.

 

The Digital Archiving Consultancy, The Bioinformatics Research Centre, University of Glasgow & The National e-Science Centre, 2005. Large-scale data sharing in the life sciences: the Joint Data Standards Study Report

  • Study on large-scale data sharing practices across the life sciences, highlingthing as fundamentals aspects: standards development and implementation, data planning and management, support frameworks and tools, barriers and funding models, incentives. Prepared for BBBSRC, the Department of Trade and Industry, JISC, MRC, NERC and the Wellcome Trust.

 

Corti, L. & Wright, M. 2002. MRC Population Data Archiving and Access Project

  • A UK Data Archive consultation report to MRC on data sharing and archiving practices of population-based research communities - including trials -, highlighting a need for standards, practical guidance, rights management frameworks, consent arrangements for data sharing, promotion of a culture of data sharing, policy and service provision for data access and sharing.

 

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