Petition for progress towards clinical trial transparency in the draft Clinical Trial Regulation

[Whippit]

I received a call for action in an email this week asking if I'd sign a petition to improve the way clinical trial results and collected and published in Europe.

I'm not posting this up to recommend it - just passing on the information for you to have a look at. I'd be interested in other people's opinions. I know little about how different European countries share information from clinical trials but the idea seems positive - particularly with diseases like Ovarian Cancer which are rare and our clinicians are therefore working with other countries in research and development.

The email gave the following url where information can be found on the petition.

alltrials.net/

From that page if you click on the 'Supporters' tab it shows all the logos of dozens of organisations that have supported this petition.

[Whippit]

Yes, it is shocking, and how many trials are replicated. The address by the Chair of Ovarian Cancer Action to the British Society of Medicine included an appeal to clinicians to abstain from repeating trials unnecessarily, and their clinical trials scrutineers rejected applications where identical trials were already taking place.

It does seem from what professionals say that there needs to be more joined-up thinking with clinical trials and drugs assessment. Roche, who produce Avastin, alleged at the APPG for OvCa in May that having drugs tested in every single country was driving up the costs unnecessarily and suggested that nations could work together to good effect.

I can understand this petition may be much stronger if patients are voicing an opinion as well as major charities and organisations.

x Annie

[MargaretJ]

I got it too Annie!

[Hilsuk]

Hi. Agree this is shocking and not right, have happily signed it- thanks Annie

Hilary xx

[Hidden]

What an impressive list of signatories... I'm signing it and forwarding it etc....

[Whippit in reply to Hidden]

It's been incredibly helpful to understand how others feel. I'm always nervous about signing petitions if I don't really understand the subject. I felt it was a good cause. I'll sign it too. xxx

[Izzystep]

Definitely signing this one!! Communication across all countries is so important if we are going to beat OC. We need everyone working together to get better results for us OC ladies. Thanks for sharing. Love n hugs Izzy xxxxx

[Hidden]

Hi Annie .. It doesn't say why these trial results aren't published. Is it because he country wants to get ahead of the game in terms of knowledge? It's confusing why they would withhold information.. When the patients from each country would benefit too. Love Tina x x

[Anjen]

Hi Annie, I have signed. Love. Lakshmy

[AnnieMae]

Hi Annie, just read and signed. Unbelievable that both money and results are being 'wasted' in this way. However, we shouldn't be surprised because it happens time and again in all aspects of our lives.

Love

Annette xxx