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Bookmarked by The Editorial Team on 28 May 2010
data (1) sharing (1)

Sharing of research data

by Donald J Harris

Geoffrey Boulton lays out the case for sharing scientific data, and advises that the UK's Royal Society has established a working group to examine the implementation issues and to make recommendations.

21st February 2018 • comment

Collaboration which allows protocol build, data collection and data sharing via free and open access web support.  

8th February 2018 • comment

Elizabeth Warren addresses the policy, privacy, and practical issues affecting data sharing in clinical trails. 

8th February 2018 • comment

A Global, Neutral Platform for Sharing Trial Data

by Bierer B, Li R, Barnes M, Sim I

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.

8th February 2018 • comment

This 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.

8th February 2018 • comment

Cancer Research UK highlights some key initiatives and repositories which may provide tools and guidance for data sharing in the academic clinical trial field.

8th February 2018 • comment

Research Data Management and Sharing

by University of North Carolina

The University of Carolina offers a free eLearning course about data management and sharing.

8th February 2018 • comment

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 M

The two-day symposium enabled an international group to meet and share experiences of the TwiCs design and to discuss plans for future research.

8th February 2018 • comment

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

8th February 2018 • comment

The ACDM represents professionals working in the management of clinical data

8th February 2018 • comment

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

8th February 2018 • comment

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.

8th February 2018 • comment

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.

8th February 2018 • comment

Guidelines for MRC research and management of data. 

8th February 2018 • comment

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 • comment

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.    

8th February 2018 • comment

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.

8th February 2018 • comment

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

8th February 2018 • comment

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.

8th February 2018 • comment

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.

8th February 2018 • comment

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

8th February 2018 • comment

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.

8th February 2018 • comment

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.

8th February 2018 • comment

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.

8th February 2018 • comment

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 • comment

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 • comment

This study determines how well authors comply with data sharing policies in Clinical Research Trails. 

7th February 2018 • comment

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.

7th February 2018 • comment

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. 

7th February 2018 • comment

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. 

7th February 2018 • comment

Data Sharing at a Crossroads

by Frank Rockhold, Perry Nisen, Andrew Freeman

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

7th February 2018 • comment

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. 

7th February 2018 • comment

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.

7th February 2018 • comment

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. 

7th February 2018 • comment

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.

7th February 2018 • comment

Clinical Trial Data Sharing

by Barbara Bierer

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

7th February 2018 • comment

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.

7th February 2018 • comment

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.

7th February 2018 • comment

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

7th February 2018 • comment

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. 

7th February 2018 • comment

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. 

7th February 2018 • comment

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. 

6th February 2018 • comment

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. 

6th February 2018 • comment

Data Sharing

by Dan L. Longo, Jeffrey M. Drazen

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

6th February 2018 • comment

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.

6th February 2018 • comment

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

6th February 2018 • comment

Basing Informed Decisions on the Totality of the Evidence

6th February 2018 • comment

Application Description and Policy Model in Collaborative Environment for Sharing of Information on Epidemiological and Clinical Research Data Sets

by Elias César Araujo de Carvalho, Adelia Portero Batilana, Julie Simkins, Henrique Martins, Jatin Shah, Dimple Rajgor, Anand Shah, Scott Rockart, Ricardo Pietrobon

This article describes a web appliaction for data sharing for clinical research. 

6th February 2018 • comment

Biomedical Data Sharing and Reuse: Attitudes and Practices of Clinical and Scientific Research Staff

by Lisa M. Federer, Ya-Ling Lu, Douglas J. Joubert, Judith Welsh, Barbara Brandys

This study investigates these differences in experiences with and perceptions about sharing data, as well as barriers to sharing among clinical and basic science researchers.

6th February 2018 • comment

This article looks at the thriving interest in open science and the inevitable widespread adoption of data, and how the two can be managed. 

6th February 2018 • comment

Approaches and Costs for Sharing Clinical Research Data

by Erin E. Wilhelm, Emily Oster, Ira Shoulson

This article looks at the complex issues behind data sharing in clinical trials. 

6th February 2018 • comment

This article looks at the interaction in the USA between sharing data from clinical trails and the Privacy Rule adopted under the Health Insurance Portability and Accountability Act.

6th February 2018 • comment

Sharing Data and Experience: Using the Clinical and Translational Science Award (CTSA) “Moral Community” to Improve Research Ethics Consultation

by Maureen Kelley, Kelly Fryer-Edwards, Stephanie M Fullerton, Thomas H Gallagher, Benjamin Wilfond
6th February 2018 • comment

This article proposes a controlled secure aggregation protocol to secure both privacy and accuracy when researchers outsource their clinical research data for sharing

6th February 2018 • comment

DICOM for quantitative imaging biomarker development: a standards based approach to sharing clinical data and structured PET/CT analysis results in head and neck cancer research

by Andriy Fedorov, David Clunie, Ethan Ulrich, Christian Bauer, Andreas Wahle, Bartley Brown, Michael Onken, Jörg Riesmeier, Steve Pieper, Ron Kikinis, John Buatti, Reinhard R. Beichel

Article on the devolpment of Imaging biomarkers and the need for data sharing for this. 

6th February 2018 • comment

IMPACT Observatory: tracking the evolution of clinical trial data sharing and research integrity

by Karmela Krleža-Jerić, Mirko Gabelica, Rita Banzi, Marina Krnić- Martinić, Bibiana Pulido, Mersiha Mahmić-Kaknjo, Ludovic Reveiz, Josip Šimić , Ana Utrobičić, Irena Hrgović

The objective of this paper is to present the IMPACT Observatory as well as share some of its preliminary findings

6th February 2018 • comment

The question at the center of the open-science efforts for clinical trials should not be whether data should be shared, but rather how we can usher in responsible methods for doing so.

6th February 2018 • comment

Emerging molecular markers for the prognosis of differentiated thyroid cancer patients

by Enke Baldini, Salvatore Sorrenti, Chiara Tuccilli, Natalie Prinzi, Carmela Coccaro, Antonio Catania, Angelo Filippini, Marco Bononi, Enrico De Antoni, Massimino D'Armiento, Salvatore Ulisse

A review into new molecular markers potentially able to ameliorate the prognosis in thyriod cancer patients.

6th February 2018 • comment

An article arguing that full transparency of clinical trial data is an essential prerequisite to achieving research integrity. 

6th February 2018 • comment

Data Sharing Policy

by The Medical Research Council

The Medical Research Council's policy on data sharing.

6th February 2018 • comment

Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings

by Susan Bull, Phaik Yeong Cheah, Spencer Denny, Irene Jao, Vicki Marsh, Laura Merson, Neena Shah More, Le Nguyen Thanh Nhan, David Osrin, Decha Tangseefa, Douglas Wassenaar, Michael Parker

This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings.

6th February 2018 • comment

Sharing Individual-Level Health Research Data: Experiences, Challenges and a Research Agenda

by Phaik Yeong Cheah, Nicholas P. J. Day, Michael Parker, Susan Bull

In this paper, we share our experiences establishing data management systems and data-sharing infrastructure including a data-sharing policy, data access committee and related procedures.

6th February 2018 • comment

Data Sharing and the Journal

by Jeffrey M. Drazen

The Journal seeks to show it's commitment to data sharing in the setting of clinical trials.

6th February 2018 • comment

Do you have research ideas for using big data to fill gender data gaps? Announcing the Big Data for Gender Challenge! Research proposals are due on July 7, 2017

24th May 2017 • comment