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