31st May 2013

Dear Friends

There is a lot to tell you this week, including a good result in a crucial vote in Europe and progress in the US, and we need your help to get more international organisations in the campaign.

European legislation

MEPs have voted to add amendments to the Clinical Trials Regulation that would increase transparency (more details here: http://www.alltrials.net/news/update-from-eu-vote/) MEPs told us that the letters they got from hundreds of you made a difference in winning some of the votes. Next, the Regulation must be voted for by the entire European Parliament and then there will be months of negotiations on it between the Parliament and the Council (representatives of member states’ governments). There is a battle ahead because some member states don’t even believe that there should be a publicly accessible clinical trials database.

Progress in the US

Democratic Representative Ed Markey has introduced the TEST Act which, if passed, will stipulate that every clinical trial used by a company in support of a marketing authorisation for a medicine in the US will have to have been registered and results from it reported.

International organisations

Dartmouth Medical School is leading the AllTrials campaign in the US, asking med schools, patient and consumer groups to join.  European consumer organisation BEUC and the European Patients’ Forum, which represents 150 million patients, have joined the campaign. We need organisations from all around the world to join. Many of you said you’d help. Please let us know how you got on.

Health Research Authority wants to hear from you

The HRA published its draft Transparent research report which suggests practical steps researchers, funders and ethics committees can take to ensure all clinical trials are registered and results reported, and now wants to hear what other people think of the proposals. Read the report and find out how to respond before 10th June here: http://www.hra.nhs.uk/hra-news-and-announcements/transparent-research/

Coming up…

A new website is coming soon – thanks to your donations. We have reached over half way to our fundraising target – with the rest of funds raised we can really start to pull campaigning efforts together. https://www.justgiving.com/alltrials

On Monday 3rd June the House of Commons Science and Technology Committee is questioning David Willetts, Minister for Universities and Science and Lord Howe, Minister for Health on clinical trials.