Transparency interrupted: the curtailment of the European Medicines Agency's Policy on access to documents.
by Peter DoshiPeter Doshi looks at the curtailment of EMA’s policy on access to documents, which is rgues is a major step backward for the transparency of clinical trials and for public health.
Part III: Meeting the Challenge When Data Sharing Is Required
by de Wolf, V. A, Sieber, J. E, Steel, P. M, Zarate, A. OThe article describes several approaches that can be used in meeting the challenges posed by the sharing of confidential data.
Part II: HIPAA and Disclosure Risk Issues
by Virginia A. de Wolf, Joan E. Sieber, Philip M. Steel, Alvan O. ZarateThis guide looks at whether deidentification is sufficient in data sharing.
Part I: What Is the Requirement for Data Sharing?
by Virginia A. de Wolf, Joan E. Sieber, Philip M. Steel, Alvan O. ZarateThis article looks at rules and regulations for data sharing.
Sharing individual level data from observational studies and clinical trials: a perspective from NHLBI
by Sean A Coady, Elizabeth WagnerThe 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
by Cleary, M, Jackson, D, Walter, GThis article argues that ownership of research data is a complex issue and warrents cafeful examination.
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
by Chan, A.-W, Song, F, Vickers, A, Jefferson, T, Dickersin, K, Gotzsche, P. C, Krumholz, H, Ghersi,D, van der Worp, H. BThis 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
by Burstein, M. D, Robinson, J. O, Hilsenbeck, S. G, McGuire, A. L, Lau, C. C.The current study examines genomic research participants' attitudes to explore differences in data sharing preferences between parents of pediatric patients and adult patients.
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
by Elliott AntmanElliot Antman explore issues surrounding data sharing in scientific research
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”
by The Editorial TeamThe 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
by Marie Neumann, Astrid ErberCollaboration which allows protocol build, data collection and data sharing via free and open access web support.
Strengthening Research through Data Sharing
by Elizabeth WarrenElizabeth Warren addresses the policy, privacy, and practical issues affecting data sharing in clinical trails.
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
by Charlotte J. HaugThis 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
by Cancer research UKCancer 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
by University of North CarolinaThe University of Carolina offers a free eLearning course about data management and sharing.