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Animal Ethics Biosafety Human Research Ethics Research Integrity

(US) How the FDA could save 2,700 clinical trials from becoming research waste – TranspariMED (Till Bruckner | January 2022)

Posted by Dr Gary Allen in Human Research Ethics, Research Integrity on March 6, 2022
Keywords: Beneficence, Clinical trial, Institutional responsibilities, International, Medical research, Merit and integrity, Research results

The Linked Original Item was Posted On January 24, 2022

A woman working on a laptop, referring to a piece of paper

Some American companies and institutions will simply refuse to make their clinical trial results public as required by federal law unless the U.S. Food and Drug Administration imposes fines on them, new data suggest.

While such a move would be an incredibly welcome move and good use of existing governance mechanisms, it is worth noting the U already has a law on the books that requires the publication of clinical trials results.  The fact the US has 3,000 missing clinical trial results is completely unacceptable.  The situation is inefficient, disrespectful and potentially dangerous.  Offenders should always be fined, penalised and publicly called out.  We have included links to 14 related items.

CASE STUDY ONE: CUTERA

‘Medical aesthetics’ company Cutera appears unwilling to disclose efficacy and safety data from clinical trials of the medical devices it sells – unless and until the FDA forces it to put its cards on the table. TranspariMED has over the past two years repeatedly exhorted the company to come clean about its 16 overdue clinical trial results, and upload them onto ClinicalTrials.gov as required by law. Countless emails, Tweets, and blogs later, Cutera has still not made a single result public on the registry, making it America’s worst performer in relative terms.

CASE STUDY TWO: UNIVERSITY OF VIRGINIA

The University of Virginia currently owes its patients and the public the results of 28 clinical trials in violation of the law, making it by far the most profligate law-breaker among American medical research institutions. In early November last year, TranspariMED reached out to the university, pointed out the missing results, and encouraged it to fix the problem. Ten weeks later, the university has still not improved its performance. It is still the country’s worst performer in absolute terms.

The National Institutes of Health have the power to cut off future grant funding to the university over its legal violations, as Deborah Zarin, the former administrator of the ClinicalTrials.gov registry, pointed out on Twitter:

How the FDA could save 2,700 clinical trials from becoming research waste
Some American companies and institutions will simply refuse to make their clinical trial results public as required by federal law unless the U.S. Food and Drug Administration imposes fines on them, new data suggest. CASE STUDY ONE: CUTERA ‘Medical aesthetics’ company Cutera appears unwilling to dis…

Related Reading

(EU) European law could improve ‘scandalous’ lack of clinical trial data reporting – Science (Barbara Casassus | July 2021)

(US) Following court ruling, NIH warns drug and device companies to post missing trial data – STAT News (Lev Facher | August 2020)

(US) Federal judge rules clinical trial sponsors must publish a decade’s worth of missing data – STAT (Lev Facher | February 2020)

(US) FDA and NIH let clinical trial sponsors keep results secret and break the law – Science (Charles Piller | January 2020)

European universities dismal at reporting results of clinical trials – Nature (Nic Fleming | April 2019)

Not Reporting Results of a Clinical Trial Is Academic Misconduct – ACP (Editorial | Joshua D. Wallach, MS, PhD; Harlan M. Krumholz, MD, SM | May 2019)

(US/UK) Data suggest US, UK universities fall woefully short on reporting clinical trial results – Endpoints News (Natalie Grover | March 2019)

Major medical journals don’t follow their own rules for reporting results from clinical trials – Science (Jocelyn Kaiser | February 2019)

(UK) Crackdown on unreported trials is good news for researchers – *Research (Till Bruckner | November 2018)

Tool ‘names and shames’ hidden drug trials – BBC (Chris Foxx | February 2018)

“A concerning – largely unrecognised – threat to patient safety:” Nursing reviews cite retracted trials – Retraction Watch (Alison McCook | January 2018)

Opinion: Where’s the data? Missing trial results undermine pandemic preparedness – Devex (Till Bruckner | November 2017)

New federal rules (US) target woeful public reporting of clinical trial results – STAT (Charles Piller September 2016)

Australian New Zealand Clinical Trials Registry (ANZCTR)

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