The G-FINDER public search tool provides open access to G-FINDER survey data that is not protected b
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Sharing of research databy 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.
Collaboration which allows protocol build, data collection and data sharing via free and open access web support.
Strengthening Research through Data Sharingby Elizabeth Warren
Elizabeth Warren addresses the policy, privacy, and practical issues affecting data sharing in clinical trails.
A Global, Neutral Platform for Sharing Trial Databy 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.
From Patient to Patient — Sharing the Data from Clinical Trialsby Charlotte J. Haug
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.
Data sharing guidance for CRUK researchers initiatives and repositories to support clinical rseacrhers with data management and sharing contentsby Cancer research UK
Cancer 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 Sharingby University of North Carolina
The University of Carolina offers a free eLearning course about data management and sharing.
The ethics of 'Trials within Cohorts' (TWiCs) 2nd international symposiumby 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.
Research Data Oxford » Data management planningby Research Data Oxford
The 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 Foundationby Gates Foundation
The Bill and Melinda Gates foundation answers questions about their open access policy.
Data sharing statements for clinical trialsby 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.
A methodological approach for assessing the uptake of core outcome sets using ClinicalTrials.gov: findings from a review of randomised controlled trials of rheumatoid arthritisby Kirkham J, Clarke M, Williamson P
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.
Good Practice Principles for Sharing Individual Participant Data from Publicly Funded Clinical Trials (Version 1) GOOD PRACTICE PRINCIPLES FOR SHARING INDIVIDUAL PARTICIPANT DATA FROM PUBLICLY FUNDEDby Tudur Smith C
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 studyby 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.
Making research data repositories visible: The re3data.org registryby 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.
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.
Are Scientific Data Repositories Coping with Research Data Publishing?by Assante M, Candela L, Castelli D, Tani A
This study analyses the solutions offered by generalist scientific data repositories.
The Yale Open Data Access (YODA) Project — A Mechanism for Data Sharingby Harlan M. Krumholz, Joanne Waldstreicher
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.
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 Campby Lisa Rosenbaum
Lisa Rosenbaum looks at both sides of the data sharing discussion.
Avoiding Data Dumpsters — Toward Equitable and Useful Data Sharingby 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.
Incentives for Clinical Trialists to Share Databy Bernard Lo, David L. DeMets
Sharing of data from clinical trials benefits patients by enabling new discoveries, meta-analyses, and confirmation of published results.
Sharing Clinical Trial Data: A Proposal from the International Committee of Medical Journal Editorsby 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.
A systematic review of motivational interviewing for weight loss among adults in primary careby Barnes RD, Ivezaj V
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.
Effectiveness of a motivational interviewing intervention on weight loss, physical activity and cardiovascular disease risk factors: a randomised controlled trial with a 12-month post-intervention folby Sarah J Hardcastle, Adrian H Taylor, Martin P Bailey, Robert A Harley, Martin S Hagger
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.
Empirical study of data sharing by authors publishing in PLoS journalsby Savage C, Vickers A
This study determines how well authors comply with data sharing policies in Clinical Research Trails.
Preparing raw clinical data for publication: guidance for journal editors, authors, and peer reviewersby 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.
The importance of clinical trial data sharing: toward more open scienceby Joseph S. Ross, Richard Lehman, Cary P. Gross
The double-edged sword of open access to research data.
Sharing Clinical Research Data City: Washington, D.C. Publisher: National Academies Pressby 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.
Data Sharing at a Crossroadsby Frank Rockhold, Perry Nisen, Andrew Freeman
The clinical research community is at an important crossroads about sharing data.
BioSharing: curated and crowd-sourced metadata standards, databases and data policies in the life sciencesby 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.
Data sharing statements for clinical trials: a requirement of the International Committee of Medical Journal Editorsby 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.
Blockchains for Data Sharing in Clinical Research: Trust in a Trustless Worldby John Sotos, David Houlding
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.
Data Sharing; Transparency Initiative - The Multi-Regional Clinical Trials Center of Harvard and Brigham and Women's Hospitalby MCRT
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.
Clinical Trial Data Sharingby Barbara Bierer
Barbara Bierer presents changes in data sharing, and gives solutions to challenges facing the feild.
The Project Data Sphere Initiative: Accelerating Cancer Research by Sharing Databy 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.
A SOA-Based Platform to Support Clinical Data Sharingby 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.
Feasibility, Process, and Outcomes of Cardiovascular Clinical Trial Data Sharingby Hawkins C. Gay, Abigail S. Baldridge, Mark D. Huffman
Data sharing is as an expanding initiative for enhancing trust in the clinical research enterprise
Introduction to Research Electronic Data Capture (REDCap) and REDCap2SDTM, a Conversion Tool to Facilitate Clinical Research Data Sharingby Yamamoto K
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.
Data sharing through an NIH central database repository: a cross-sectional survey of BioLINCC usersby 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.
Clinical research data sharing: what an open science world means for researchers involved in evidence synthesisby Joseph S. Ross
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.
Data sharing and the evolving role of statisticiansby 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.
Data Sharingby Dan L. Longo, Jeffrey M. Drazen
The article poses the question: How would data sharing work best?
Development of an open-source, flexible framework for complex inter-institutional disparate data sharing and collaborationby 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.
Technical and policy approaches to balancing patient privacy and data sharing in clinical and translational research.by Bradley Malin, David Karp, Richard H. Scheuermann
In this paper, we review several aspects of the privacy-related problems associated with data sharing for clinical research from technical and policy perspectives.
Open Science and Data sharing in Clinical research: Basing Informed Decisions on the Totality of Evidenceby Krumholz H
Basing Informed Decisions on the Totality of the Evidence
Application Description and Policy Model in Collaborative Environment for Sharing of Information on Epidemiological and Clinical Research Data Setsby 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.
Biomedical Data Sharing and Reuse: Attitudes and Practices of Clinical and Scientific Research Staffby 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.
The Changing Structure of Industry-Sponsored Clinical Research: Pioneering Data Sharing and Transparencyby Richard E. Kuntz
This article looks at the thriving interest in open science and the inevitable widespread adoption of data, and how the two can be managed.
Approaches and Costs for Sharing Clinical Research Databy Erin E. Wilhelm, Emily Oster, Ira Shoulson
This article looks at the complex issues behind data sharing in clinical trials.
Sharing clinical research data in the United States under the health insurance portability and accountability act and the privacy ruleby James D Miller
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.
Sharing Privacy Protected and Statistically Sound Clinical Research Data Using Outsourced Data Storageby Geontae Noh, Ji Young Chun, Ik Rae Jeong
This article proposes a controlled secure aggregation protocol to secure both privacy and accuracy when researchers outsource their clinical research data for sharing
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 researchby 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.
IMPACT Observatory: tracking the evolution of clinical trial data sharing and research integrityby 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
Statistical controversies in clinical research: data access and sharing—can we be more transparent about clinical research? Let’s do what’s right for patientsby F. W. Rockhold
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.
Emerging molecular markers for the prognosis of differentiated thyroid cancer patientsby 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.
Sharing of clinical trial data and research integrityby KARMELA KRLEŽA-JERIĆ
An article arguing that full transparency of clinical trial data is an essential prerequisite to achieving research integrity.
Data Sharing Policyby The Medical Research Council
The Medical Research Council's policy on data sharing.
Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settingsby 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.
Sharing Individual-Level Health Research Data: Experiences, Challenges and a Research Agendaby 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.
Data Sharing and the Journalby Jeffrey M. Drazen
The Journal seeks to show it's commitment to data sharing in the setting of clinical trials.