80 patient groups (eighty!) sign up to alltrials.net in one go! Then Cancer Research UK!

February 15th, 2013 by Ben Goldacre in alltrials campaign | 1 Comment »

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:

www.alltrials.net/wp-content/uploads/2013/01/Missing-trials-briefing-note.pdf

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

Age UK

Action for Sick Children

Afiya Trust

Alpha 1 Awareness UK

Alzheimer’s Society

Anticoagulation Europe

Arrhythmia Alliance

Arthritis Care

Asthma UK

Beat

Bliss

Blood Pressure Association

Bowel Cancer UK

Brain and Spine Foundation UK

Breakthrough Breast Cancer

Brains Trust

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

Changing Faces

Crohn’s and Colitis UK

Counsel and Care

CSV

Diabetes UK

Different Strokes

The Disabilities Trust

Ear Foundation

Encaphalitis Society

Epilepsy Action

Genetic Alliance UK

Rare Disease UK

INPUT

James Whale Fund for Kidney Cancer

June Hancock Mesothelioma Research Fund

Kidney Alliance

La Leche League GB

Leukaemia CARE

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

Myeloma UK

MS Society

National Ankylosing Spondylitis Trust

National Association of Deafened People

National Childbirth Trust

National Osteoporosis Society

National Rheumatoid Arthritis Society

Epilepsy Society

National Voices

NI Chest & Stroke

No Panic

Pain UK

Patients Association

Pelvic Pain Support Network

The Pernicious Anaemia Society

The Pituitary Foundation

Prostate Cancer UK

PXE (PiXiE) Europe

Rethink

Royal National Institute of Blind People

The Royal Society for Public Health NGO forum

Sarcoma UK

Scleroderma Society

STARS

Stonewall

Target Ovarian Cancer

Together for short lives

Urostomy Association

Well UK

Young Minds

 


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One Response



  1. robindelamotte said,

    February 19, 2013 at 8:36 pm

    I created an Avaaz petition.
    secure.avaaz.org/en/petition/Strong_EU_Clinical_Trials_Regulation_to_ensure_the_results_of_all_clinical_trials_are_made_public/

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