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Part II: HIPAA and Disclosure Risk Issues

This guide looks at whether deidentification is sufficient in data sharing. 

Part I: What Is the Requirement for Data Sharing?

This article looks at rules and regulations for data sharing. 

Sharing individual level data from observational studies and clinical trials: a perspective from NHLBI

The National Heart, Lung, and Blood Institute (NHLBI) has developed a data-sharing protocol focused on balancing the interests of study participants, study investigators, and the research community with independent oversight by the NHLBI IRB.

Editorial: Research data ownership and dissemination: is it too simple to suggest that 'possession is nine-tenths of the law

This article argues that ownership of research data is a complex issue and warrents cafeful examination. 

A review of the barriers to sharing in biobanking

This article provides a description of the barriers to sharing in biobanking, discusses key themes, and concludes that empirical research is required to determine the full extent of the challenges addressed in the literature.

Increasing value and reducing waste: addressing inaccessible research

This article looks at the problems caused by inaccessible data to journal reporting, finance and funding; it then looks at possible solutions. 

Pediatric data sharing in genomic research: attitudes and preferences of parents

The current study examines genomic research participants' attitudes to explore differences in data sharing preferences between parents of pediatric patients and adult patients.

Withholding access to research data

Elizabeth Pisani and colleagues highlight obstacles to data sharing in public health. However, they omit a potentially crucial one: investigators manipulating evidence that might contradict their hypotheses or conclusions.

Data sharing in research: benefits and risks for clinicians

Elliot Antman explore issues surrounding data sharing in scientific research

Data sharing for pharmacokinetic studies

This article looks at the problems of data sharing in clinical trials, data ownership and development of databases to enable safe sharing processes. 

Open Public Consultation on “Strengthened cooperation against vaccine preventable diseases”

The European Commission is looking into ways to support  EU member states to address re-emerging preventable diseases and to increase vaccine coverage in Europe. This policy discussion is set against the background of an increase of vaccination hesitancy in several countries, vaccines shortages and vaccines R&D challenges. As part of this process, The European Commission has launched a public consultation.

Researchers in/from Africa: please take the GloSYS Africa survey to share your experience

CDISC | Strength Through Collaboration

Collaboration which allows protocol build, data collection and data sharing via free and open access web support.  

Strengthening Research through Data Sharing

Elizabeth Warren addresses the policy, privacy, and practical issues affecting data sharing in clinical trails. 

A Global, Neutral Platform for Sharing Trial Data

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 Trials

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 contents

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 Sharing

The University of Carolina offers a free eLearning course about data management and sharing.

The ethics of 'Trials within Cohorts' (TWiCs) 2nd international symposium

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 planning

The University of Oxford's tips for data management planning.