Transparency and objectivity in governance of clinical trials data sharing: current practices and approaches

M Shabani, M Obasa - Clinical Trials, 2019 - journals.sagepub.com
Sharing metadata, individual participant data and summary data, as a complement to results
dissemination and trial registration requirements, is perceived to be advantageous by …

From the bench to the bedside in the big data age: ethics and practices of consent and privacy for clinical genomics and personalized medicine

PA Chow-White, M MacAulay, A Charters… - Ethics and Information …, 2015 - Springer
Scientists and clinicians are starting to translate genomic discoveries from research labs to
the clinical setting. In the process, big data genomic technologies are both a risk to …

Perspectives on clinical trial data transparency and disclosure

D Alemayehu, RJ Anziano, M Levenstein - Contemporary Clinical Trials, 2014 - Elsevier
The increased demand for transparency and disclosure of data from clinical trials sponsored
by pharmaceutical companies poses considerable challenges and opportunities from a …

[HTML][HTML] FAIR data management: what does it mean for drug discovery?

Y Gadiya, V Ioannidis, D Henderson… - Frontiers in Drug …, 2023 - frontiersin.org
The drug discovery community faces high costs in bringing safe and effective medicines to
market, in part due to the rising volume and complexity of data which must be generated …

A global federated real-world data and analytics platform for research

MB Palchuk, JW London, D Perez-Rey, ZJ Drebert… - JAMIA …, 2023 - academic.oup.com
Objective This article describes a scalable, performant, sustainable global network of
electronic health record data for biomedical and clinical research. Materials and Methods …

Reflections on sharing clinical trial data: challenges and a way forward: proceedings of a workshop

C Shore, J Hinners, E Khandekar, T Wizemann - 2020 - books.google.com
On November 18 and 19, 2019, the National Academies of Sciences, Engineering, and
Medicine hosted a public workshop in Washington, DC, titled Sharing Clinical Trial Data …

Multi-disciplinary fairness considerations in machine learning for clinical trials

I Chien, N Deliu, R Turner, A Weller, S Villar… - Proceedings of the …, 2022 - dl.acm.org
While interest in the application of machine learning to improve healthcare has grown
tremendously in recent years, a number of barriers prevent deployment in medical practice …

Big Biological Data: Need for a Reorientation of the Governance Framework

E Demir - … IEEE Conference on Computational Intelligence in …, 2022 - ieeexplore.ieee.org
Biological data (biodata) has become a buzzword for innovations in this century. With
pioneering advances in machine learning techniques and artificial intelligence, biological …

Ethics challenges in sharing data from pragmatic clinical trials

SR Morain, J Bollinger, K Weinfurt… - Clinical Trials, 2022 - journals.sagepub.com
Numerous arguments have been advanced for broadly sharing de-identified, participant-
level clinical trials data, and trial sponsors and journals are increasingly requiring it …

[HTML][HTML] Research ethics in big data

MJ Hammer - Number 3/May 2017, 2017 - ons.org
The ethical conduct of research includes, in part, patient agreement to participate in studies
and the protection of health information. In the evolving world of data science and the …