The International Stroke Trial database
by Peter AG Sandercock, Maciej Niewada, Anna Członkowska, the International Stroke Trial Collaborative GroupWe aimed to make individual patient data from the International Stroke Trial (IST), available for public use, to facilitate the planning of future trials and to permit additional secondary analyses.
Ushering in a new era of open science through data sharing: the wall must come down
by Joseph S. Ross, Harlan M. KrumholzThis article argues against selective publication and for a clear view of the totality of evidence relevant to many research questions and clinical decisions.
Promoting transparency in pharmaceutical industry-sponsored research
by Ross JS, Gross CP, Krumholz HMPolicies that promote transparency in the clinical trial research process, through improved and expanded disclosure of investigator contributions and funding, comprehensive publicly available trial registration, and independent analysis of clinical trial data analysis may address these subversive practices by improving accountability among industry and investigators.
Lack of access to detailed information about clinical trials can undermine the integrity of medical knowledge.
This study looks at the sharing of data between researchers; it details concerns about speed of reply, and highlights an unfortunate situation where researchers are more concerned with losing an advantage than advancing science.
Sharing of clinical trial data among trialists: a cross sectional survey
by Vinay Rathi, Kristina Dzara, Cary P Gross, Iain Hrynaszkiewicz, Steven Joffe, Harlan M Krumholz, Kelly M Strait, Joseph S RossThis article investigate clinical trialists’ opinions and experiences of sharing of clinical trial data with investigators who are not directly collaborating with the research team.
Improving health research governance and management in the Western Pacific: A WHO Expert Consultation
by Manju Rani, Hendrik Bekedam, Brian S. BuckleyWHO organised an expert consultation on research in the Western Pacific
A mechanism for controlled access to GWAS data: experience of the GAIN Data Access Committee
by Ramos EM, Din-Lovinescu C, Bookman EB, McNeil LJ, Baker CC, Godynskiy G, Harris EL, Lehner T, McKeon C, Moss J, Starks VL, Sherry ST, Manolio TA, Rodriguez LLThis article looks at how access to GAIN information has furthered advances in he understanding of the genetic underpinnings of mental-health disorders, diabetes, and psoriasis.
Drug watchdog ponders how to open clinical trial data vault
by Tania RabesandratanaEMA is discussing how to shape the new policy with academics, patient organizations, and drug companies; their final advice is due by the end of next month.
Towards a data sharing culture: recommendations for leadership from academic health centers
by Heather A Piwowar, Michael J Becich, Howard Bilofsky, Rebecca S CrowleyHeather A Piwowar proposes that AHCs can and should lead the transition towards a culture of biomedical data sharing.
Withholding access to research data - Authors' reply
by Elizabeth Pisani, James Whitworth, Basia Zaba, Carla AbouZahrThe Lancet suggests that transparency in science will increase public trust and reduce the deliberate manipulation of data to score political, financial, or ideological points.
Time for fair trade in research data
by Elizabeth Pisani, James Whitworth, Basia Zaba, Carla Abou-ZahrThis argues for all the positives of data sharing
In this round table paper, we suggest goals for data sharing and a work plan for reaching them, and challenge respondents to move beyond well intentioned but largely aspirational data sharing plans.
This article argues that it is inappropriate to prescribe exactly when or how researchers should preserve and share data.
Ethical data release in genome-wide association studies in developing countries
by Michael Parker, Susan J. Bull, Jantina de Vries, Tsiri Agbenyega, Ogobara K. Doumbo, Dominic P. KwiatkowskiThis article looks at the ethical problems involved in data sharing within the Genome-Wide Association Studies in Developing Countries
Access to patient-level data from GlaxoSmithKline clinical trials. New England Journal of Medicine
by Perry Nisen, Frank RockholdGSK reccently trailed the sharing of deidentified patient-level data. This article describes the approach adopted and answers some of the most common questions received
Preparing for responsible sharing of clinical trial data.
by Michelle M. Mello, Jeffrey K. Francer, Marc Wilenzick, Patricia Teden, Barbara E. Bierer, Mark BarnesThis article argues that expanded data sharing must be pursued thoughtfully.
Systematic archiving and access to health research data: rationale, current status and way forward.
by Manju Rani, Brian S BuckleyThis paper discusses important developments in data-sharing policy and highlights factors in health research that may affect policy implementation
Sharing data for public health: where is the vision?
by Alan D LopezThis article argues that WHO need to take leadership of the data sharing debate
Is there a duty to share? Ethics of sharing research data in the context of public health emergencies
by Pinky Langat, Dmitri Pisartchik, Diego Silva, Carrie Bernard, Kolby Olsen, Maxwell Smith, Sachin Sahni, Ross UpshurThis article explores the foundation and nature of a duty, if any, that researchers have to share data, specifically in the context of public health emergencies.