European Patients’ Forum:
http://www.alltrials.net/wp-content/...2.07.20131.pdf

We strongly believe that any results, even of trials that failed or produced unexpected or inconclusive outcomes, contribute to the totality of the evidence base on therapies, and can help target future research to where it is needed.

EPF further acknowledges the benefits of sharing raw data from clinical trials to enable researchers to revisit and reanalyse these data. This is in the interest of good science, patients, and the public.

European Aids Treatment Group:
http://www.eatg.org/news/168638/EATG...gs_trials_data

We believe that patients do a great service, willingly participating in clinical trials for the benefit of medical science and the greater good. (Sometimes of course for their own good too!) It is a travesty of justice that this data is then considered to be ‘private.’ It should be in the public arena all to see - easy to access and free for all.

This is not a complicated position – it is however a position that we hold to with great conviction. Any consultant or company trying to engage us in a lobby against this position would be worse than pointless - it would be counterproductive.

ECPC:

Brussels, 25 July 2013 – The European Cancer Patient Coalition was greatly concerned by the content of article The Guardian on July 22, 2013, published on its website “Big pharma mobilising patients in battle over drugs trials data” (http://www.guardian.co.uk/business/2...t-drugs-trials) with the subtitle “The pharmaceutical industry has “mobilised” an army of patient groups to lobby against plans to force companies to publish secret documents on drugs trials.”

We condemn the generalized and unsubstantiated accusation that “an army of patients groups” are being “mobilised by Pharma to lobby against plans to force companies to publish secret documents on drugs trials”. ECPC is funded, among others, by the pharmaceutical industry as well as several of its more than 300 members across 42 countries in Europe and beyond. However, ECPC supports the publication of all results, positive or negative, of all clinical trials, irrespective of how they are funded. Patients by their enrolment in clinical trials contribute to research and societal good and therefore, they should have equal access to all results of all trials, as these results concern their own health and life.

ECPC supports alltrials.net petition for all clinical trials to be registered and reported regardless of their outcomes. In clinical trials, ECPC supports the registration of all trials by researchers and sponsors prior to the patient enrolment, rapid review processes, sound scientific scrutiny by researchers and clinicians and the use of open access web-based resources and methods, enabling patients and their clinicians to be informed about potential new therapies and all trials results.

ECPC, the European Cancer Patient Coalition was established in 2003, under the slogan “Nothing About Us, Without Us” as a non-profit organization to act as an umbrella cancer patient group. Over the last ten years, ECPC has grown in size and scope, and we are now the only European organization governed by cancer patient groups.

For more information please contact Prof. Francesco de Lorenzo, ECPC President, Francesco.delorenzo@ecpc-online.be, tel. +39335409663 or the Mrs. Kathi Apostolidis, Vice President, kathi.apostolidis@ecpc-online.org tel. +30-6977340758

All American and Canadian groups:
What, me worry?