News about clinical trial transparency

[lynmynott]

The AllTrials Campaign have sent an email regarding the World Health Organisation and other organisation's agreement to adopt strong standards on clinical trial transparency:

Dear AllTrials friends and supporters,

It's Clinical Trials Day and we have huge news from the WHO. Major global funders and international NGOs have agreed to adopt the WHO's strong standards on clinical trial transparency.

This means all clinical trials they fund or support will be registered and the results reported.

This is a big step forward.

Dr Ben Goldacre said:

"This is truly fantastic news. We cannot make informed choices about which treatments work best when the results of completed clinical trials are routinely withheld from doctors, researchers and patients. The scandal of unreported clinical trials has arisen because of a longstanding failure to take responsibility, throughout the whole ecosystem of medicine.

It is a huge relief to see government research funders now taking a lead. If every funder does what they commit to in this clear policy statement, they will not just be making promises, they also commit to engaging in a thorough process of open audit, so that everyone can see whether they have complied with their own transparency policies. This is a great day for patients, and for the reputation of medicine."

Síle Lane, head of international campaigns and policy, Sense about Science said:

"This is great news. It’s great news for the patients who volunteered for clinical trials that have never published results; for researchers re-running trials that they don’t know already happened; and great news for all of us who expect our doctors to know whether our medicines work. It’s especially important to see the signatories calling for the development of systems to monitor whether results are being shared. We need ways to monitor which results are missing. This will help us celebrate the organisations who are finding ways to share results, and to call out those who are letting us down."

April Clyburne-Sherin, campaign manager, AllTrials USA said:

"

This group of funders and non-governmental organizations is leading the way in a much needed move from awareness to action. Registration and reporting policy, compliance monitoring, and enforcement is now the Gold Standard by which other clinical trial funders and organizations will be measured. Other clinical research organizations should see this as an opportunity to raise their standards to match. This is a turning point in our conversation about the problem of missing clinical trials. Today is the day leaders in the clinical trial community embraced a new status quo where all trials are registered and all results are reported."

You can read more about the announcement including the list of signatories and full statement here:

alltrials.net/news/funders-...

[shaws Administrator]

Thanks Lyn for posting. It might complement with Dr Kendrick's post.

[Justiina]

This indeed is great news! Now we hopefully can put behind the shameful era where information was kept from those who deserved to know about it. Patients. I hope we can stop second quessing and less conspiracy theories.

[nightingale-56]

Thanks for posting this lynmynott . I read this a few days ago, but could not work out how to post it. Does this mean that the generic Levothyroxine that we now have and are suffering awful side effects from (all we are allowed in UK) have had to undergo Trials?

[lynmynott Partner Thyroid UK in reply to nightingale-56]

Unfortunately not. It means that any future trials have to be transparent. AllTrials are trying to get old trial information published too but it's a big task.

[Clutter]

Thanks, Lyn. Very good news and long overdue.

[helvella Administrator Thyroid UK]

It is a step, and an important step at that.

BUT (for there will always be sometime to cavil at) will WE be able to see them?

Will ordinary patients and the greater public have access? Or will they be locked away behind paywalls so high that they would make a wall-building president weep?

[lynmynott Partner Thyroid UK in reply to helvella]

Not sure of the answer to that, Helvella...