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Surprising Science

World Health Organization Demands Pharmaceutical Companies Stop Withholding Clinical Trials as Study Finds Over Half of Registered Clinical Trials Are Never Published

In the United States, the FDA has the power to fine drug companies $10,000 a day for failing to publish clinical trials, yet most clinical trials still never see the light of day.

Shocking as it may seem, it is currently fairly standard practice for drug companies to withhold clinical trials with negative results, allowing doctors to blindly prescribe drugs that don’t work or are even dangerous. In the United States, failing to publish clinical trials is punishable by a fine of $10,000 per day, but shockingly the fine has never actually been issued as Dr. Ben Goldacre explains in his editorial in PloS Medicine. This is particularly unbelievable given that a recent study found that more than half of the clinical trials registered on within a given time period were never actually published (within the time period allowed by law). An earlier study, which found similar results, also demonstrated that even when the results are published, negative side effects and even serious adverse events are routinely left out of the published version.

Now, the World Health Organization (WHO) has joined in the chorus calling for the registration and publication of all clinical trials, by issuing a definitive statement. The WHO has demanded that all clinical trials are registered in a publicly available, free-to-access database before any trial is initiated and that the main findings of any study are submitted to an open-access, peer-reviewed journal within 12 months of completion, or otherwise be made publicly available within 24 months.

Sadly, the WHO’s demands are not legally binding. The WHO is merely the latest in a very long list of organizations to call for the publication of clinical trials:

Just in case you’re reading this on your mobile, here’s that list in text form. I hope you have your scrolling finger ready:

Academy of Medical Royal Colleges

ACHSE e.V. (German National Alliance for Chronic Rare Diseases)

Action for M.E.

Action for Sick Children

Addison’s Disease Self Help Group

Adelaide Health Technology Assessment

Advertising Health

AEP (Spanish Evidence-based Paediatrics)


Afiya Trust

Age UK

AIDS Coalition to Unleash Power Paris

AIDS Treatment Activists Coalition

Alkaptonuria Society

All Ireland Institute of Hospice and Palliative Care

Allen Carr’s Easyway

Alpha 1 Awareness UK

Alzheimer’s Australia Dementia Research Foundation

Alzheimer’s Society

American Board of Sport Psychology

American Institute for Technology and Science Education

American Medical Student Association

amfAR The Foundation for AIDS Research

Anticoagulation Europe

Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesselschaften

Arrhythmia Alliance

Arthritis and Musculoskeletal Alliance

Arthritis Care

Arthritis Research UK

ASH Scotland

Asociación Española de Pediatría de Atención Primaria

Association for the Advancement of Experimental and Applied Hypnosis

Association of Medical Research Charities

Associazione Alessandro Liberati – Network Italiano Cochrane

Associazione Salute Attiva Onlus

Asthma UK

Australasian College for Emergency Medicine

Australasian College of Nutritional and Environmental Medicine

Australasian Medical Writers Association

Australian Medical Students’ Association

Australian Pain Management Association

Autism Rights Group Highland

Avon Primary Care Research Collaborative

Bad Science Watch

Balance – Familienplanungszentrum


Beating Bowel Cancer

Behcet’s Syndrome Society

Belgian Centre for Evidence Based Medicine (cebam)

Belgian Health Care Knowledge Centre (KCE)

Berne Declaration

BEUC The European Consumer Organisation


BioMed Central

BioNorte – Basque Health Sciences Society

Birmingham Skeptics in the Pub

Birth Trauma Association


Bladder Cancer Support UK


Blood Pressure Association

Bond University

Bone Cancer Research Trust

Bowel Cancer UK

Brain and Spine Foundation UK

Brains Trust

BRCA Netzwerk

Breakthrough Breast Cancer

Breast Cancer Campaign

Bristol and Avon Chinese Women’s Group

British Association for Counselling and Psychotherapy

British Association of Dermatologists

British Dietetic Association

British Dupuytren’s Society

British Heart Foundation

British HIV Association (BHIVA)

British Institute of Radiology

British Library

British Liver Trust

British Lung Foundation

British Medical Association

British Nutrition Foundation

British Obesity Surgery Patients

British Pharmaceutical Students’ Association

British Pharmacological Society

British Porphyria Association

British Psychological Society

British Science Association

British Society for Gene and Cell Therapy

British Society for Immunology

British Society for Sexual Health and HIV

British Society for the Study of Vulval Diseases

British Society of Periodontology

British Thyroid Foundation

British Tinnitus Association

British Veterinary Association

BUKO Pharma-Kampagne

Bundesverband Prostatakrebs Selbsthilfe e. V.

Bury Knowle Patient Participation Group

Canadian Agency for Drugs and Technologies in Health

Canadian Cancer Research Alliance

Canadian Cancer Society

Canadian Cochrane Centre

Canadian HIV Trials Network

Canadian Medical Association

Cancer Research UK


Cardiff University

Cardiff University Systematic Review Network (SysNet)

Cardiomyopathy Association

Cavernoma Alliance UK

CEBM Laboratory

CEMBE (Centro de Estudos de Medicina Baseada na Evidência)

Center for Evidence-Based Physiotherapy

Center for Information and Study on Clinical Research Participation

Center for Open Science

Centre for Evidence Based Policy

Centre for Evidence-based Veterinary Medicine

Centre for Reviews and Dissemination, University of York

Centre for Statistics in Medicine

Centre for Sustainable Healthcare

Centre of Evidence Based Dermatology

Changing Faces

Chemist and Druggist Magazine

Children’s Liver Disease Foundation

Chronic Granulomatous Disorder Society

Chronic Pain Research Alliance

CILIP: the Chartered Institute of Library and Information Professionals

Clinical Pharmacist

Clinical Trial Service Unit & Epidemiological Studies Unit, University of Oxford

Cochrane Eyes and Vision Group

Cochrane Skin Group

College of Mental Health Pharmacists

College of Optometrists

College of Psychiatric and Neurologic Pharmacists

Colombia Médica

COMCEPT – The Portuguese Skeptics Community

Committee On Publication Ethics

Community Service Volunteers

Consumers United for Evidence-based Healthcare


Consumers Health Forum of Australia

Contact Help Advice Information Network

Copenhagen Trials Unit

Corporate Europe Observatory

CRA School Group

Critical Appraisal Skills Programme International Network

Critical Appraisal Skills Programme Mexico

Critical Appraisal Skills Programme Spain

Critical Appraisal Skills Programme UK

Cuban Journal for Information in Health Science (Revista Cubana de Información en Ciencias de la Salud)

Cure Crohn’s Colitis

Cystic Fibrosis Unite

Dalhousie AllTrials Student Society

Depression Alliance

Deutsche Dupuytren-Gesellschaft

Deutsche Gesellschaft für Neurologie

Diabetes UK

Dianthus Medical Ltd

Dietitians of Canada

Different Strokes


Disabilities Trust

Doctors Reform Society

Drug and Therapeutics Bulletin

Drug Commission of the German Medical Association

Drug Information Center of National University of Colombia (CIMUN)

Duchenne Foundation Australia

Dutch Association of Pharmaceutical Medicine





Empower: Access to Medicine

Encaphalitis Society

Epilepsy Action

Epilepsy Society


Equator Network

Ethics Committee of Provincies of Verona and Rovigo

European AIDS Treatment Group

European Association of Hospital Pharmacists

European Association of Science Editors

European Cancer Patient Coalition

European Central Council of Homeopaths

European Continuing Medical Education Forum

European Federation of Clinical Chemistry and Laboratory Medicine

European Federation of the Associations of Dietitians

European Journal of Hospital Pharmacy

European Patients’ Forum

European Prostate Cancer Coalition (Europa UOMO)

European Public Health Alliance

European Public Health Association (EUPHA)

European Society of Clinical Pharmacy


Evidence for Democracy

Evidence-Based Veterinary Medicine Association

Evidencias en Pediatria

F1000 Research


Faculty of Pharmaceutical Medicine

Faculty of Public Health

Faculty of Sexual and Reproductive Healthcare

Failed Implant Device Alliance



Farnham Humanists

Feel Yourself Campaign

Fetal Anti-Convulsant Trust


Genesis Research Trust

Genetic Alliance UK

Genetics Disorders UK

German Association of Hospital Pharmacists (ADKA)

German Clinical Trials Register

German Institute for Quality and Efficiency in Health Care (IQWiG)

German League of People Against Rheumatism

German Medical Association of Applied Kinesiology DÄGAK

German Network for Evidence Based Medicine (ebm)

German Public Health Association

German Society for Health Technology Assessment (

German Society for Wound Healing and Wound Treatment

Gesellschaft zur wissenschatlichen Untersuchung von Parawissenschaften e.V.

Gesundheit Aktiv

GIMBE Foundation

Global Healthcare Information Network

Green Party Ireland

Group B Strep Support

Groupe de Recherche et d’Action pour la Santé


Guild of Healthcare Pharmacists

Guildford Skeptics in the Pub

Haematology Clinical Trials Unit

Health Action International Europe

Health Action International Global

Health Care Without Harm

Health Faculty at Universidad del Valle

Health Press

Health Projects for Latvia

Health Research Authority

Healthcare Information For All


Healthy Skepticism UK

Histologie Zytologie Laboratorium Nussdorf

Hospital Pediatrico de Sinaloa (HSP)

Hospital Pharmacists Association Ireland

Hull York Medical School

Hungarian League Against Cancer

Hypermobility Syndromes Association


Iberoamerican Cochrane Centre

Idea Pharma


Imperial Clinical Trials Unit


Independent Age

Independent Cancer Patients’ Voice

InDependent Diabetes Trust


Institute for Evidence Based Medicine, College of Medicine, Korea University

Institute of Physics and Engineering in Medicine

Integrative Psychological Services of New York City

Intensive Care Foundation

Intensive Care National Audit and Research Centre

Intensive Care Society

International Alliance of Patients’ Organizations

International Brain Tumour Alliance

International Coalition for treatment preparedness in Eastern Europe and Central Asia

International Federation of Anthroposophical Medical Associations

International Federation of Medical Students’ Associations

International Institute for Advanced Studies of Psychotherapy and Applied Mental Health

International Journal of Gynecology and Obstetrics

International Physicians for the Prevention of Nuclear War

International Society for Evidence Based Health Care

International Society of Drug Bulletins

International Union of Basic & Clinical Pharmacology (IUPHAR)

Iranian Food & Drug Organisation

IRCCS – Mario Negri Institute for Pharmacological Research

Irish Cancer Society

Irish Hospice Foundation

Irish Medical Organisation

Italian Association of Neuroepidemiology

Italian Federation of Volunteer-based Cancer Organisations (FAVO)

ITP Support Association


James Lind Institute

James Whale Fund for Kidney Cancer

Joanna Briggs Institute

Joining Jack

Journal of Cognitive and Behavioural Psychotherapies

Journal of Kathmandu Medical College

June Hancock Mesothelioma Research Fund

Kidney Cancer Support Network

King’s Clinical Trials Unit

King’s College London

La Leche League GB

Laarkarin Sosiaalinen Vatsuu – Physicians for Social Responsibility


Leukaemia CARE

LILA Onlus – Lega Italiana per la Lotta contro l’Aids (Italian League for Fighting Aids)

Liverpool School of Tropical Medicine

London School of Hygiene & Tropical Medicine

Lyme Disease Action

Lymphoma Association

Macmillan Cancer Support

Macular Society

Marie Curie Cancer Care

Más Ciencia por México (More Science for Mexico)

MDS UK Patient Support Group





Medical Journal of Australia

Medical Research Council

Medical Sciences Division, University of Oxford

Medicos Sin Marca




Mental Health Europe




Mission Arogya Health and Information Technology Research Foundation

Mobility and Sickness Information Service


Motor Neurone Disease Association

Mouth Cancer Foundation

MRSA Action UK

MS Discovery Forum

Multiple Sclerosis Society

Muscular Dystrophy Campaign

Muscular Dystrophy Support Group

Myeloma UK

National Ankylosing Spondylitis Society

National Association of Deafened People

National Childbirth Trust

National Collaborating Centre for Mental Health

National Committee for Research Ethics in Norway

National Health and Medical Research Council of Australia

National Institute for Health and Care Excellence (NICE)

National Osteoporosis Society

National Physicians Alliance

National Rheumatoid Arthritis Society

National Union of Scientific Medical Information

National Voices

NEPI Foundation

Netherlands Cancer Institute

Netherlands Epidemiological Society



New Zealand Medical Association

NHS Blood and Transplant

NHS Research & Development Forum

NHS Vale of York Clinical Commissioning Group

NI Chest & Stroke

NISCHR Clinical Research Centre

No Gracias

No Grazie Pago Io

No Panic

North London Humanist Group

North Wales Organisation for Randomised Trials in Healthcare

North Yorkshire Humanist Group

Northern California Regional Organization of Child and Adolescent Psychiatry

Norwegian Cancer Society

Norwegian Knowledge Centre for Health Services (Kunnskapssenteret)

Nottingham Clinical Trials Unit

OCD Action

Open Knowledge Foundation

OPEN Project

Open Science Federation

Organisation for Anti-Convulsant Syndromes

Otago Medical Research Foundation

Otago University Medical Students Association

Ovarian Cancer Action

Ovarian Cancer Alliance of San Diego

Oxford Clinical Trials Research Unit

Oxford Humanists

Oxford Skeptics in the Pub

Oxford University Hospitals NHS Trust

Oxford Vaccine Group

Pain UK

Pancreatic Cancer UK

Parkinson Society Canada

Parkinsons UK

Patient Coalition Switzerland

Patients Association

Patients Involved in NICE


Pelvic Pain Support Network


Pharmaceutical Journal (PJ Online)



PHG Foundation


Plaid Cymru


Plymouth Community Healthcare

Plymouth University Peninsula Clinical Trials Unit

Plymouth University Peninsula Schools of Medicine & Dentistry

Positive People Armenian Network

Pragmatic Clinical Trials Unit

Primary Care Diabetes Society

Primary Care Respiratory Society UK

Primary Immunodeficiency UK


Prostate Cancer UK

PXE (PiXiE) Europe


Radical Statistics

Reconstructive Surgery Trials Network

Red Whale

Research Autism

Research Design and Conduct Service


Rett Syndrome Research Trust

Royal College of General Practitioners

Royal College of Obstetricians and Gynaecologists

Royal College of Paediatrics and Child Health

Royal College of Pathologists

Royal College of Physicians

Royal College of Physicians of Edinburgh

Royal College of Psychiatrists

Royal College of Radiologists

Royal College of Veterinary Surgeons Charitable Trust

Royal National Institute of Blind People

Royal Pharmaceutical Society

Royal Society of Medicine

Royal Statistical Society

Russian Society for Evidence Based Medicine

SABRE Research UK

Safer Medicines Campaign


Sage Bionetworks

Salamander Trust

Salud y Fármacos

Sarcoma Patients EuroNet

Sarcoma UK

Scientists for Global Responsibility

Scleroderma Society

Scottish Intercollegiate Guidelines Network

Sealed Envelope


Selling Sickness

SLE Lupus Foundation

Society for Clinical Trials

Society for the Improvement of Science

Society of Biology


South African Medical Research Council

South East Wales Trials Unit

Spanish Society of Medical Radiology

Stichting Tekenbeetziekten


Stop AIDS Campaign

Stroke Association

Students 4 Best Evidence

Support in Mind in Scotland

Swedish College of General Practice (SFAM)

Swedish Medical Association

Swedish Paediatric Society

Swedish Skeptics Association

Swiss MS Society

Swiss Multiple Sclerosis Society

Syncope Trust and Reflex anoxic Seizures

Target Ovarian Cancer

Tatarstan Medical Students’ Association

Teenage Cancer Trust

Teesside Skeptics in the Pub

Tenovus Cancer Care

Terrence Higgins Trust

Test Positive Aware Network

Test-Achats, Belgian Consumer Organisation

The Association for Clinical Biochemistry

The Association of Democratic Pharmacists (The VdPP)

The Association of Research Ethics Committees

The Brain Tumour Charity

The British Society for Rheumatology

The Chartered Society of Physiotherapy

The College of Podiatry

The Dupuytren Foundation

The Ear Foundation

The Faculty of Intensive Care Medicine

The Guidelines International Network G-I-N

The Health Cloud

The Information Standard

The Institute of Clinical Research

The Kidney Alliance

The Lupus Research Institute

The Lymphoedema Support Network

The Migraine Trust

The Open University

The Pernicious Anaemia Society

The Pituitary Foundation

The Renal Association

The Royal Institution

The Swiss Skeptics (Skeptiker Schwiez)

The TMJ Association

The Welsh Intensive Care Society

Therapeutic Guidelines Ltd


This Theory

Throat Cancer Foundation

Thyroid Patient Advocacy

Thyroid UK

Together for short lives

Transform Drug Policy Foundation

Transparency International Deutschland e.V.

Transparency Life Sciences

Transverse Myelitis Society

TREAT-NMD Alliance

Treatment Action Campaign

Treatment Action Group



Turkish Clinical Research Association

UK Clinical Pharmacy Association

UK Cystic Fibrosis Gene Therapy Consortium

UK Dermatology Clinical Trials Network

UK Research Integrity Office

UK Sepsis Trust

UK Thalassaemia Society

UKCRC Registered Clinical Trials Unit Network


United European Gastroenterology

University Hospitals Coventry and Warwickshire NHS Trust

University of Edinburgh

University of Lisbon Faculty of Medicine

University of Oxford Diabetes Trials Unit

University of York

Urostomy Association

Wales Cancer Trials Unit

Waverley Care

Well UK

Wellcome Trust

Western Australian Clinical Oncology Group


Wilson’s Disease Support Group UK

Wings for Life

World Association of Medical Editors

World Confederation for Physical Therapy

Young Minds

ZonMw, the Netherlands Organisation for Health Research and Development

I think it is fair to say that the consensus is resounding. There is no excuse for the status quo. The surprisingly fascinating tale of how we came to be in this mess and why it matters such a great deal is told expertly by medical doctor and master storyteller Dr. Ben Goldacre, the brainchild of the All Trials campaign, in the bookBad Pharma. Don’t worry, you don’t need to be a doctor, a scientist, or an academic to understand it or find it interesting or useful, but if you do happen to be a doctor, you should certainly read it (if you haven’t already).

For the spark notes, check out Goldacre’s TED talk on the topic:

And/or his more recent and more detailed talk at the International Forum on Quality and Safety in Healthcare:


Goldacre B. (2015). How to Get All Trials Reported: Audit, Better Data, and Individual Accountability, PLOS Medicine, 12 (4) e1001821. DOI:

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