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Technical and policy approaches to balancing patient privacy and data sharing in clinical and translational research.

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 Evidence

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 Sets

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 Staff

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 Transparency

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 Data

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 rule

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 Storage

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 research

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 integrity

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 patients

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 patients

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

Sharing of clinical trial data and research integrity

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

Data Sharing Policy

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 Settings

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 Agenda

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.

Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research

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.

Data Sharing and the Journal

The 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

An 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

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.