Basing Informed Decisions on the Totality of the Evidence

6th February 2018 • 0 comments

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 • 0 comments

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 • 0 comments

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 • 0 comments

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 • 0 comments

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 • 0 comments

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 • 0 comments

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 • 0 comments

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 • 0 comments

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 • 0 comments

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 • 0 comments

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

6th February 2018 • 0 comments

Data Sharing Policy

by The Medical Research Council

The Medical Research Council's policy on data sharing.

6th February 2018 • 0 comments

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 • 0 comments

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 • 0 comments

This 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.

6th February 2018 • 0 comments

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 • 0 comments

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. Williamson

An article looking at the major issues facing access to, and sharing of, Individual Participant Data.

6th February 2018 • 0 comments

Developing Ethical Practices for Public Health Research Data Sharing in South Africa

by Spencer G. Denny, Blessing Silaigwana, Douglas Wassenaar, Susan Bull, Michael Parker

Amid 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.

6th February 2018 • 0 comments

A useful editorial by Ben Goldacre reviewing the current status of data sharing in clinical trials’

5th February 2018 • 0 comments