Preparing raw clinical data for publication: guidance for journal editors, authors, and peer reviewers

by Iain Hrynaszkiewicz, Melissa L Norton, Andrew J Vickers, Douglas G Altman

Iain Hrynaszkiewicz and colleagues propose a minimum standard for de-identifying datasets to ensure patient privacy when sharing clinical research data.

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The importance of clinical trial data sharing: toward more open science

by Joseph S. Ross, Richard Lehman, Cary P. Gross

The double-edged sword of open access to research data. 

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Sharing Clinical Research Data City: Washington, D.C. Publisher: National Academies Press

by Institute of Medicine, National Cancer Policy Forum, Board on Health Sciences Policy, Board on Health Care Services, Forum on Drug Discovery, Development, and Translation, Forum on Neuroscience and Nervous System Disorders, Roundtable on Translating Genomic-Based Research for Health, Steve Olson, Autumn S. Downey, Rapporteurs

This e-book covers benefits, barriers and models for data sharing. 

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Data Sharing at a Crossroads

by Frank Rockhold, Perry Nisen, Andrew Freeman

The clinical research community is at an important crossroads about sharing data. 

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BioSharing: curated and crowd-sourced metadata standards, databases and data policies in the life sciences

by Peter McQuilton, Alejandra Gonzalez-Beltran, Philippe Rocca-Serra, Milo Thurston, Allyson Lister, Eamonn Maguire, Susanna-Assunta Sansone

BioSharing harnesses community curation to collate and cross-reference resources across the life sciences from around the world. 

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Data sharing statements for clinical trials: a requirement of the International Committee of Medical Journal Editors

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 ICMJ gives its vision for a global research community in which sharing de-identified data becomes the norm.

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Data sharing is now a major theme in clinical research. However, effective, ethical sharing of clinical research data requires trust: research subjects must trust investigators to preserve their privacy, investigators must trust each other to give credit where credit is due, and the integrity of the entire research enterprise must be trusted by all. 

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The Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT) aims to improve the integrity, safety, and rigor of global clinical trials.

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Clinical Trial Data Sharing

by Barbara Bierer

Barbara Bierer presents changes in data sharing, and gives solutions to challenges facing the feild. 

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The Project Data Sphere Initiative: Accelerating Cancer Research by Sharing Data

by Green AK, Reeder-Hayes KE, Corty RW, Basch E, Milowsky MI, Dusetzina SB, Bennett AV, Wood WA

Access to large, late-phase, cancer-trial data sets has the potential to transform cancer research by optimizing research efficiency and accelerating progress toward meaningful improvements in cancer care.

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A SOA-Based Platform to Support Clinical Data Sharing

by R. Gazzarata, B. Giannini, M. Giacomini

This article looks at the development of software to enhance the integration between patient-care practice and medical research.

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Feasibility, Process, and Outcomes of Cardiovascular Clinical Trial Data Sharing

by Hawkins C. Gay, Abigail S. Baldridge, Mark D. Huffman

Data sharing is as an expanding initiative for enhancing trust in the clinical research enterprise

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A new tool for the capture and conversion of clinical data is introduced as a way to encourage reuse of data and to reduce workloads in new studies. 

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Data sharing through an NIH central database repository: a cross-sectional survey of BioLINCC users

by Joseph S Ross, Jessica D Ritchie, Emily Finn, Nihar R Desai, Richard L Lehman, Harlan M Krumholz, Cary P Gross

This article assesses the use of the BioLINCC by clinical researchers. 

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This article looks at how data sharing could change and challenge design, conduct, and reporting of systematic reviews and meta-analyses for Clinical Research, as well as it's impact on those involved in evidence synthesis. 

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Data sharing and the evolving role of statisticians

by Nick Manamley, Steve Mallett, Matthew R. Sydes, Sally Hollis, Alison Scrimgeour, Hans Ulrich Burger, Hans-Joerg Urban

Statisticians are ambassadors for data sharing and are central to its success; this article looks at how the role is changing with new technologies and trends for data transparency. 

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Data Sharing

by Dan L. Longo, Jeffrey M. Drazen

The article poses the question: How would data sharing work best?

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Development of an open-source, flexible framework for complex inter-institutional disparate data sharing and collaboration

by Kirby C, Ambros P, Billiter D, London W, Mendonca E, Monclair T, Pearson A, Cohn S, Volchenboum S

The devolpment of a data sharing database makes it easier to harmonize and manage for data mining.

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In this paper, we review several aspects of the privacy-related problems associated with data sharing for clinical research from technical and policy perspectives.

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