This week in transparency news: August 31 – September 6, 2019

by Staff writer,
Posted on 9/6/2019

Transparency in clinical trials is continually changing, and to stay on top of the news, TrialAssure brings a weekly round-up of some of the key stories surrounding disclosures in clinical trials. This week’s stories are as follows:

WHO launches registry for gene editing studies– Regulatory Focus

The World Health Organization (WHO) recently announced the launch of its global human genome editing research registry. The launch of this registry comes shortly after the agency formed an expert advisory committee on developing oversight of human genome editing.

Michael Mezher has the full story here

Whose data is it anyway? – Eye for Pharma

MY data, a UK-based patient group, is working to build confidence in the use of healthcare data. As many patients struggle to find out who has access to their personal information, MY data urges the healthcare industry to improve its transparency practices.

Read Andrew Stone’s piece in Eye for Pharma

Study finds big data eliminates confidentiality in court judgements – swissinfo.ch

A study by the University of Zurich’s Institute of Law found that algorithms that mine large amounts of data can re-identify people involved in federal court rulings. The study analyzed more than 122,000 federal court decisions and relied on a “web scraping technique” that mined the data, emphasizing the need for sophisticated, comprehensive approaches to data anonymization.

Read the story on swissinfo.ch

Current Project Data Sphere list of peer-accepted publications – Project Data Sphere

Project Data Sphere—a free digital library that provides researchers patient-level data from academic and industry phase III cancer clinical trials—recently published its list of peer-accepted publications.

View the entire list of peer-accepted publications

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