The International Stroke Trial database

by Peter AG Sandercock, Maciej Niewada, Anna Członkowska, the International Stroke Trial Collaborative Group

We 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.

22nd February 2018 • 0 comments

This article argues against selective publication and for a clear view of the totality of evidence relevant to many research questions and clinical decisions.

22nd February 2018 • 0 comments

Policies 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.

22nd February 2018 • 0 comments

Clinical trial data as a public good

by Marc A. Rodwin, John D. Abramson

Lack of access to detailed information about clinical trials can undermine the integrity of medical knowledge.

22nd February 2018 • 0 comments

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.

22nd February 2018 • 0 comments

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 Ross

This article investigate clinical trialists’ opinions and experiences of sharing of clinical trial data with investigators who are not directly collaborating with the research team.

22nd February 2018 • 0 comments

WHO organised an expert consultation on research in the Western Pacific

22nd February 2018 • 0 comments

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 LL

This 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.

22nd February 2018 • 0 comments

EMA 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.

22nd February 2018 • 0 comments

Towards a data sharing culture: recommendations for leadership from academic health centers

by Heather A Piwowar, Michael J Becich, Howard Bilofsky, Rebecca S Crowley

Heather A Piwowar proposes that AHCs can and should lead the transition towards a culture of biomedical data sharing.

22nd February 2018 • 0 comments

Withholding access to research data - Authors' reply

by Elizabeth Pisani, James Whitworth, Basia Zaba, Carla AbouZahr

The Lancet suggests that transparency in science will increase public trust and reduce the deliberate manipulation of data to score political, financial, or ideological points.

22nd February 2018 • 0 comments

Time for fair trade in research data

by Elizabeth Pisani, James Whitworth, Basia Zaba, Carla Abou-Zahr

  This argues for all the positives of data sharing

21st February 2018 • 0 comments

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.

21st February 2018 • 0 comments

This article argues that it is inappropriate to prescribe exactly when or how researchers should preserve and share data.

21st February 2018 • 0 comments

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. Kwiatkowski

This article looks at the ethical problems involved in data sharing within the Genome-Wide Association Studies in Developing Countries

21st February 2018 • 0 comments

GSK reccently trailed the sharing of deidentified patient-level data. This article describes the approach adopted and answers some of the most common questions received

21st February 2018 • 0 comments

Preparing for responsible sharing of clinical trial data.

by Michelle M. Mello, Jeffrey K. Francer, Marc Wilenzick, Patricia Teden, Barbara E. Bierer, Mark Barnes

This article argues that expanded data sharing must be pursued thoughtfully.  

21st February 2018 • 0 comments

This paper discusses important developments in data-sharing policy and highlights factors in health research that may affect policy implementation

21st February 2018 • 0 comments

This article argues that WHO need to take leadership of the data sharing debate

21st February 2018 • 0 comments

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 Upshur

This 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. 

21st February 2018 • 0 comments