Technical and policy approaches to balancing patient privacy and data sharing in clinical and translational research.
by Bradley Malin, David Karp, Richard H. ScheuermannIn 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 Evidence
by Krumholz HBasing 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 Sets
by Elias César Araujo de Carvalho, Adelia Portero Batilana, Julie Simkins, Henrique Martins, Jatin Shah, Dimple Rajgor, Anand Shah, Scott Rockart, Ricardo PietrobonThis article describes a web appliaction for data sharing for clinical research.
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 BrandysThis 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 Transparency
by Richard E. KuntzThis 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 Data
by Erin E. Wilhelm, Emily Oster, Ira ShoulsonThis 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 rule
by James D MillerThis 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 Storage
by Geontae Noh, Ji Young Chun, Ik Rae JeongThis 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 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. BeichelArticle 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 integrity
by Karmela Krleža-Jerić, Mirko Gabelica, Rita Banzi, Marina Krnić- Martinić, Bibiana Pulido, Mersiha Mahmić-Kaknjo, Ludovic Reveiz, Josip Šimić , Ana Utrobičić, Irena HrgovićThe 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 patients
by F. W. RockholdThe 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 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 UlisseA review into new molecular markers potentially able to ameliorate the prognosis in thyriod cancer patients.
Sharing of clinical trial data and research integrity
by KARMELA KRLEŽA-JERIĆAn article arguing that full transparency of clinical trial data is an essential prerequisite to achieving research integrity.
Data Sharing Policy
by The Medical Research CouncilThe Medical Research Council's policy on data sharing.
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 ParkerThis 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 Agenda
by Phaik Yeong Cheah, Nicholas P. J. Day, Michael Parker, Susan BullIn 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.
Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research
by Susan Bull, Nia Roberts, Michael ParkerThis scoping review of empirical research and conceptual literature examined stakeholders’ perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings.
Data Sharing and the Journal
by Jeffrey M. DrazenThe Journal seeks to show it's commitment to data sharing in the setting of clinical trials.
Sharing Individual Participant Data from Clinical Trials: An Opinion Survey Regarding the Establishment of a Central Repository
by Catrin Tudur Smith, Kerry Dwan, Douglas G. Altman, Mike Clarke, Richard Riley, Paula R. WilliamsonAn article looking at the major issues facing access to, and sharing of, Individual Participant Data.
Developing Ethical Practices for Public Health Research Data Sharing in South Africa
by Spencer G. Denny, Blessing Silaigwana, Douglas Wassenaar, Susan Bull, Michael ParkerAmid increasing calls for more effective sharing of individual-level data, commitment to promote access to research data is evident within South Africa’s public research sector, but national guidance and regulation are absent.