The University of Oxford's tips for data management planning.

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The ACDM represents professionals working in the management of clinical data

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The Bill and Melinda Gates foundation answers questions about their open access policy. 

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Data sharing statements for clinical trials

by Taichman D, Sahni P, Pinborg A, Peiperl L, Laine C, James A, Hong S, Haileamlak A, Gollogly L, Godlee F, Frizelle F, Florenzano F, Drazen J, Bauchner H, Baethge C, Backus J

The ICMJE introduces it's vsion for a global research community in which sharing deidentified data becomes the norm.

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This study assess the uptake of the rheumatoid arthritis core outcome set using a new assessment method of calculating uptake from data in clinical trial registry entries.

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Guidelines for MRC research and management of data. 

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Pharmaceutical companies' policies on access to trial data, results, and methods: audit study

by Goldacre B, Lane S, Mahtani K, Heneghan C, Onakpoya I, Bushfield I, Smeeth L

This study looks at the commitments made by companies to transparency of trials.

8th February 2018 • 0 comments

Making research data repositories visible: The re3data.org registry

by Pampel H, Vierkant P, Scholze F, Bertelmann R, Kindling M, Klump J, Goebelbecker H, Gundlach J, Schirmbacher P, Dierolf U

This article describes the heterogeneous RDR landscape. Further, the article outlines the features of re3data.org, and shows how this registry helps to identify appropriate repositories for storage and search of research data.    

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Raw data from clinical trials: Within reach?

by Doshi P, Goodman S,, Ioannidis J

This article argues in favor of more widespread availability of data from clinical research.

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This study analyses the solutions offered by generalist scientific data repositories.

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The Yale Open Data Access (YODA) Project is one of several pioneering data-sharing models in use. It uses a “trusted intermediary” approach, in which an independent partner provides support, accountability, fairness, and transparency.

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Trust, Respect, and Reciprocity: Informing Culturally Appropriate Data-Sharing Practice in Vietnam

by Merson L, Phong TV, Nhan le NT, Dung NT, Ngan T, Kinh N, Parker M, Bull S

This study used in-depth interviews and focus group discussions with 48 stakeholders in Vietnam to explore the experiences, attitudes, and expectations that inform ethical and effective approaches to sharing clinical research data.

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ACCESS CV proposes a secure method of sharing sensitive patient data that balances the legitimate desire of the scientific community for data access with the responsibility to ensure high-quality analyses and protection of patients’ expectation of privacy.

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Lisa Rosenbaum looks at both sides of the data sharing discussion. 

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Avoiding Data Dumpsters — Toward Equitable and Useful Data Sharing

by Laura Merson, Oumar Gaye, Philippe J. Guerin

Although some researchers remain wary about sharing data, recent policies and proposals mean that data sharing, in one form or another, is inevitable.

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Incentives for Clinical Trialists to Share Data

by Bernard Lo, David L. DeMets

Sharing of data from clinical trials benefits patients by enabling new discoveries, meta-analyses, and confirmation of published results.

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Sharing Clinical Trial Data: A Proposal from the International Committee of Medical Journal Editors

by Taichman DB, Backus J, Baethge C, Bauchner H, de Leeuw PW,, Drazen JM, Fletcher J, Frizelle FA, Groves T, Haileamlak A, James A, Laine C, Peiperl L, Pinborg A, Sahni P, Wu S

The International Committee of Medical Journal Editors (ICMJE) believes that there is an ethical obligation to responsibly share data generated by interventional clinical trials.

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Motivational interviewing (MI) is a client-centred method of intervention focused on enhancing intrinsic motivation and behaviour change. This article looks at MI in adults in primary care. 

7th February 2018 • 0 comments

This is the first study to document the longer-term effects of adapted motivational interviewing, delivered in the primary care setting, on BMI, physical activity and related CVD risk factors.

7th February 2018 • 0 comments