Patients Involved in NICE statement

Patients Involved in NICE (PIN) is pleased to support the AllTrials campaign to ensure the full details of all clinical trials, past and present, are reported and made available to regulators and clinicians.

As a coalition of more than 80 patient groups, we are committed to ensuring that the best interest of patients is at the heart of every decision the NHS takes. This can only happen if the full information about the efficacy of a treatment is available to those making health care decisions.

In particular we are concerned that the National Institute for Health and Clinical Excellence (NICE) have available the full results of all clinical trials conducted when carrying out a technology appraisal or other assessment of a new drug or intervention. The decisions of NICE can only be as good as the evidence base on which they are made; at best making decisions without access to all the evidence may waste vital NHS resources, at worst it may even result in harm to patients.

It is vital that the government, regulators and research funders move quickly to implement measures to ensure full reporting of all clinical trials.

This statement is supported by the following patient organisations within PIN:

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



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


Diabetes UK

Different Strokes

The Disabilities Trust

Ear Foundation

Encaphalitis Society

Epilepsy Action

Genetic Alliance UK

Rare Disease UK


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


Royal National Institute of Blind People

The Royal Society for Public Health NGO forum

Sarcoma UK

Scleroderma Society



Target Ovarian Cancer

Together for short lives

Urostomy Association

Well UK

Young Minds


See the other organisations who support AllTrials and read their statements here