We rely on clinical trials in medicine, but companies and researchers are able to withhold results wherever it suits them: this breaks evidence based medicine. The best available systematic review evidence estimates that around half of all trials for the treatments we use today have not been published: you can read the details on this problem, and the flawed efforts to remedy it, here.
We decided that something needed to be done, and so we set up www.alltrials.net, with Sense About Science, the BMJ, Sir Iain Chalmers (co-founder of Cochrane) and the Centre for Evidence Based Medicine in Oxford. Since then the campaign has snowballed. We have been joined by groups as diverse as MRC, the Wellcome Trust, IQWiG (the German NICE), NPA (the US doctors body) and many more.
Last week GSK signed up - one of the biggest drug companies in the world – making a commitment to open up their trial archives publicly as we have requested.
This week’s announcement is equally historic, in my view. Following discussions over the past couple of weeks, 80 patient groups have just signed up to alltrials.net, all in one go. The full list is below.
Some of you may know that patient groups come in for criticism, around the funding they receive from the pharmaceutical industry. I have always said that I am much more interested in people’s behaviour than where they get their money from, so long as this industry income is transparently declared. The important thing is that patient groups demonstrate that they are reflecting patients interests, and that they are able to work as thoughtful and critical partners with industry to improve care. This is what 80 patient groups have shown this week, by signing up to alltrials.net.
I can honestly say that this pleases more than anything else that has been achieved so far in the battle for transparency around clinical trials. While the professions have so far failed to adequately address this issue, over many decades, this is patients leading professionals.
You can read more about missing trial results here:
Please do sign alltrials.net, pass it on, and ask your professional body or patient group to do the same.
Lastly, the full list of patient groups is below. Thanks, one and all!
Action for M.E
Action for Sick Children
Alpha 1 Awareness UK
Blood Pressure Association
Bowel Cancer UK
Brain and Spine Foundation UK
Breakthrough Breast Cancer
Bristol and Avon Chinese Women’s Group
British Heart Foundation
British Nutrition Foundation
British Obesity Surgery Patients
British Society for the Study of Vulval Diseases
British Lung Foundation
Cancer Research UK
The Cardiomyopathy Association
Crohn’s and Colitis UK
Counsel and Care
The Disabilities Trust
Genetic Alliance UK
Rare Disease UK
James Whale Fund for Kidney Cancer
June Hancock Mesothelioma Research Fund
La Leche League GB
The Lymphoedema Support Network
The Lymphoma Association
Macmillan Cancer Care
The Macular Society
MDS UK Patient Support Group
The Migraine Trust
Motor Neurone Disease Association
Mouth Cancer Foundation
National Ankylosing Spondylitis Trust
National Association of Deafened People
National Childbirth Trust
National Osteoporosis Society
National Rheumatoid Arthritis Society
NI Chest & Stroke
Pelvic Pain Support Network
The Pernicious Anaemia Society
The Pituitary Foundation
Prostate Cancer UK
PXE (PiXiE) Europe
Royal National Institute of Blind People
The Royal Society for Public Health NGO forum
Target Ovarian Cancer
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