Brigham and Women's Hospital–Harvard University's Multi-Regional Clinical Trials Center is designing a platform to link existing data-sharing platforms and communities and host data from investigators who want to share data but lack the resources to do so.
From Patient to Patient — Sharing the Data from Clinical Trials
by Charlotte J. HaugThis article asks the question: how — and how much — to share, where and in what format data should be stored and accessed, and how to protect the privacy of the trial participants.
Data sharing guidance for CRUK researchers initiatives and repositories to support clinical rseacrhers with data management and sharing contents
by Cancer research UKCancer Research UK highlights some key initiatives and repositories which may provide tools and guidance for data sharing in the academic clinical trial field.
Research Data Management and Sharing
by University of North CarolinaThe University of Carolina offers a free eLearning course about data management and sharing.
The ethics of 'Trials within Cohorts' (TWiCs) 2nd international symposium
by Relton C, Burbach M, Collett C, Flory J, Gerlich S, Holm S, Hunn A, Kim S, Kwakkenbos L, May A, Nicholl J, Young-Afat D, Treweek S, Uher R, Van Staa T, Van Der Velden J, Verkooijen H, Vickers A, Welch S, Zwarenstein MThe two-day symposium enabled an international group to meet and share experiences of the TwiCs design and to discuss plans for future research.
Research Data Oxford » Data management planning
by Research Data OxfordThe University of Oxford's tips for data management planning.
The ACDM represents professionals working in the management of clinical data
Open Access Policy Frequently Asked Questions - Bill & Melinda Gates Foundation
by Gates FoundationThe Bill and Melinda Gates foundation answers questions about their open access policy.
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 JThe ICMJE introduces it's vsion for a global research community in which sharing deidentified data becomes the norm.
A methodological approach for assessing the uptake of core outcome sets using ClinicalTrials.gov: findings from a review of randomised controlled trials of rheumatoid arthritis
by Kirkham J, Clarke M, Williamson PThis 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.
Thid guide offers good practice principles for sharing data from clinical trails
Guidelines for MRC research and management of data.
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 LThis study looks at the commitments made by companies to transparency of trials.
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 UThis 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.
This article argues in favor of more widespread availability of data from clinical research.
Are Scientific Data Repositories Coping with Research Data Publishing?
by Assante M, Candela L, Castelli D, Tani AThis study analyses the solutions offered by generalist scientific data repositories.
The Yale Open Data Access (YODA) Project — A Mechanism for Data Sharing
by Harlan M. Krumholz, Joanne WaldstreicherThe 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.
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 SThis 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.
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.
Bridging the Data-Sharing Divide — Seeing the Devil in the Details, Not the Other Camp
by Lisa RosenbaumLisa Rosenbaum looks at both sides of the data sharing discussion.