Latest from All Trials Campaign

[lynmynott]

Dear AllTrials friends

New research has just revealed that most large charities and government bodies that fund clinical trials don’t have a policy to ensure results are shared. And only half of them ask researchers to register their funded trials. It's disappointing to see charities and public bodies don't have strong policies on clinical trial transparency and as co-author of the study Dr Ben Goldacre put it "We need these funders to show leadership, to tell their grant recipients very clearly that all trials must be registered and reported."

The new audit of non-commercial funders’ policies is published in JAMA by Dr Goldacre’s team at the EBMDataLab at the University of Oxford. Out of 18 charities and federal bodies, who between them spend around $40 billion on health research every year, the researchers found that only two had a strong policy that asked for trials they fund to be registered, results reported and data shared: the UK's Medical Research Council and Germany's DFG.

Last year, some of the world's major research funders, including some included in this audit, joined the WHO's joint statement on public disclosure of clinical trial results. This means that they pledged to adopt a policy that asks their researchers to adhere to the WHO’s strong standard on clinical trial transparency – that trials are registered and results publicly reported. The first group of funders joined the statement in May 2017 and the one-year deadline for adopting the new policy is coming up. The EBMDataLab’s team is going to audit or re-audit these funders in May 2018 to see whether they have fulfilled their commitments.

AllTrials is continuing to highlight our Unreported Clinical Trial of the Week every week in the BMJ. This week it’s a trial on pain relief for children who had tonsillectomies which was run with 64 children. It was sponsored by the Children’s Hospitals and Clinics of Minnesota and is overdue to report results. Read about that and catch up on the unreported trials from previous weeks here. Two of the trials we have shone a spotlight on since we started this in late February have now had results submitted to the register. This is working!

If you can, please donate something so that we can keep highlighting missing trials.

Best wishes

Sile

If you would like to donate to this cause you can do so here: justgiving.com/campaigns/ch...

[helvella Administrator Thyroid UK]

I *thought* that US government funding now came with a requirement for papers to be made freely accessible - though possibly with a one year embargo. Indeed, I thought I read something similar about UK government funding having the same requirement. Would be good to know for sure.

Pretty poor if the big charities don't ensure accessibility to all - especially those who make contributions.

[humanbean]

The JAMA article can be found here :

jamanetwork.com/journals/ja...

Noncommercial Funders’ Policies on Trial Registration, Access to Summary Results, and Individual Patient Data Availability

It isn't open access, which I find ironic given the subject matter, although if people register it might be, I'm not sure.

What does disturb me is that the title refers to Individual Patient Data Availability. In the UK patient privacy has become a dead subject - we don't have any. The government, as far as I can work out, has given itself permission to copy anything it wants from our medical records and give it to whoever they want, and they don't keep records of who they've given it too. The idea that any researcher given permission to access individual patient data then has to make that data available to other researchers as a condition of their funding is terrifying.