TranspariMED clinical trial transparency

24 Sep 2020

New data compiled by TranspariMED shows that major universities across Europe have uploaded a record number of clinical trial results over the past year.

Many universities are now racing to make hidden clinical trial results public – but some are still not meeting their obligation to fully share medical research findings.

Just over a year ago, the 29 largest medical universities...

22 Sep 2020

This month marks a milestone for clinical trial transparency in Europe. For the first time, the results of more than two thirds of drug trials are now publicly available on the European trial registry. 

On the flipside, nearly a third of all drug trials – 4,223 trials in total, including hundreds of trials involving children – are still missing results.

Remember: Every unreported...

14 Sep 2020

The UK is poised to become the first country worldwide to ensure that all clinical trials are registered and report their results, with clinical trials being registered centrally and a government agency monitoring whether their results have been made public.

A new national strategy released by the UK’s Health Research Authority comes in response to sustained campaigning by patie...

1 Sep 2020

Top medical research institutions in four countries are currently uploading missing clinical trial results onto the European trial registry at an unprecedented pace. 

  • Instituto Mario Negri – Italy

  • Vall d'Hebron University Hospital (VHIR) – Spain

  • Charité – Germany

  • Medical University Vienna – Austria

Going forward, these institutions will accelerate medic...

31 Aug 2020

Today an open letter signed by 23 health and transparency groups and five individuals from across Europe asks the European Medicines Agency to improve access to information by allowing Freedom of Information requests to be submitted by email.

Access Info Europe and TranspariMED jointly coordinated the initiative, with Access Info Europe taking the technical lead.

The issue at sta...

27 Aug 2020

In a move that will increase pressure on funders in other countries to curb medical research waste, New Zealand’s Health Research Council has committed itself to meeting global best practices in clinical trial transparency.

By becoming the twenty-second signatory to the WHO Joint Statement, New Zealand’s medical research funding agency has pledged to ensure that every clinical t...

25 Aug 2020

A recent report by TranspariMED and Health Action International documenting widespread violations of European transparency rules by major Dutch institutions running clinical trials drew a lot of public attention in the country, and led to questions being asked by parliament.

Yesterday, the responsible Dutch government agency, the Centrale Commissie Mensgebonden Onderzoek (CCMO)...

21 Aug 2020

Yesterday TranspariMED and Health Action International jointly published a report on clinical trial reporting in the Netherlands that made the front page of a national newspaper.

Our report generated a lot of public interest, but also some controversy.

Below an overview of developments over the last 24 hours.

CONTROVERSIES

Which Dutch agency is responsible for clinical trial data...

19 Aug 2020

Dutch universities have a terrible track record of making their clinical trial results public, a new report on the 23 institutions running the largest number of drug trials in the country shows.

ERRATUM 21 August: The previous version of this blog, and the report itself, incorrectly stated that the Dutch Medicines Evaluation Board is “ultimately responsible for safeguarding the...

18 Aug 2020

The US Food and Drug Administration has dashed patient hopes that it will take rapid and decisive action to force pharmaceutical companies and universities to make the results of their clinical trials public as required by law.

When trial results remain hidden, doctors and patients can get a misleading picture of the safety and effectiveness of medicines and medical devices. In...

2 Jul 2020

A coalition of 21 European health and patient groups today called on medical research institutions across the continent to make the results of their clinical trials public.

Letters sent to 56 major institutions – most of them universities and hospitals – flag their current weak performance, and ask them to explain what steps they are taking to clear their backlogs of missing tri...

25 Jun 2020

The Spanish national clinical trial registry is riddled with holes, a report released today warns. Results are verifiably missing for 122 trials, in violation of a Spanish law that requires companies and institutions running trials to upload results within a year of completing a trial.

The true number of overdue missing results is likely to be far higher, because registry entrie...

23 Jun 2020

Numerous clinical trials involving children are missing results from the European trial registry, data released by the European Medicines Agency (EMA) shows.

UPDATE 26 June: The European Medicines Agency today got in touch to challenge the figures reported in the original version of this blog. The blog below has been amended to take this new information into account. Please see...

17 Jun 2020

The results of over half of COVID drug trials currently being run in Europe are at high risk of becoming research waste, a TranspariMED report released today shows.

Out of 118 clinical trials of potential drug treatments, 79 trials are being run by companies and institutions that have no experience of uploading results onto the European clinical trial registry.

This means that th...

12 Jun 2020

In recent years, numerous universities and NHS Trusts across the UK have significantly improved their reporting of the results of drug trials.

However, it appears that at many leading institutions, these laudable efforts have not been extended to trials of medical devices, which often are of equal or even greater importance to patients.

In early April, TranspariMED filed Freedom...

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