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Association for Clinical Data Management: Training

The ACDM represents professionals working in the management of clinical data

Open Access Policy Frequently Asked Questions - Bill & Melinda Gates Foundation

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

Data sharing statements for clinical trials

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 arthritis

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 FUNDED

Thid guide offers good practice principles for sharing data from clinical trails

Section 2 Guidelines and standards A Planning and conducting MRC-funded research

Guidelines for MRC research and management of data. 

Pharmaceutical companies' policies on access to trial data, results, and methods: audit study

This study looks at the commitments made by companies to transparency of trials.

Making research data repositories visible: The re3data.org registry

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?

This article argues in favor of more widespread availability of data from clinical research.

Are Scientific Data Repositories Coping with Research Data Publishing?

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

The Yale Open Data Access (YODA) Project — A Mechanism for Data Sharing

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.

Trust, Respect, and Reciprocity: Informing Culturally Appropriate Data-Sharing Practice in Vietnam

This study used in-depth interviews and focus group discussions with 48 stakeholders in Vietnam to explore the experiences, attitudes, and expectations that inform ethical and effective approaches to sharing clinical research data.

Sharing Data from Cardiovascular Clinical Trials — A Proposal

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 Camp

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

Avoiding Data Dumpsters — Toward Equitable and Useful Data Sharing

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 Data

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 Editors

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 care

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 fol

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 journals

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