A patients involved case report on the Duchenne Parent Project collaborating with academia and industry to find a cure/treatment for Duchenne Muscular Dystrophy.
A collaboration between Bristol-Myers Squibb (BMS) with FUNDHEPA (patient organisation) to give more patients the opportunity to receive an innovative treatment for Hepatitis C through the participation in a clinical trial.
An example of public-private partnership (DevelopAKUre) from diverse international groups in industry (Sobi), patient organisations (AKU Society and ALCAP), hospitals (Royal Liverpool, Hospital Necker, and National Institute of Rheumatic Diseases), Academia (Universities of Liverpool and Siena, Institute of Molecular Physiology and Genetics) and Small and Medium Enterprises –SME– (Nordic Bioscience, PSR and Cudos) to cure alkaptonuria (AKU).
An example of patient’s own experience of being used as an interface between sponsors and participants of clinical trials. Taking place both in rare diseases with EURORDIS and HIV / AIDS Act Up, Traitements & Recherche Thérapeutique (TRT-5) and the European AIDS Treatment group (EATG).
An example of patients involved through patients and patient organisations providing input into a
Cushing’s disease clinical trial design. The consultation took place between Novartis and nurses from different teams (USA, Canada, and Brazil), Cushing’s disease patients (USA) and caregivers and patient organisation representatives.
A patients involved case report of patient feedback improving an informed consent form. UCB employees consulted patients with epilepsy and rheumatoid arthritis to make the form simpler and easier to read for the patients to understand.
A patients involved case report of patient advocacy in HIV DUET Phase III trials for a novel treatment regime using a combination of two investigational compounds: TMC125 (etravirine) and TMC114 (darunavir). Consultation between the AIDS Treatment Activists Coalition Drug Development Committee (USA), European Community Advisory Board of the European AIDS Treatment Group (ECAB EATG), and the pharmaceutical company Tibotec (now Janssen Therapeutics).