Partners from Ethic Committees (National Commission of Ethic Committees – CNCP), patient associations, and investigating centres worked in a writer’s guide of five recommendations and six rules for Informed...
Involvement of European Tuberous Sclerosis Complex Patient Organisations (E-TSC) establishing an European registry of patients living with Tuberous sclerosis complex (TSC) to address some gaps in understanding the clinical...
Inclusion of a patient expert on a pharmaceutical company’s external Bioethics Advisory Panel. The patient expert was proposed to the existing panel so a patient view would be included...
Involvement of the foundation ‘Children with SMA’ (spinal muscular atrophy) with an academic institution in Ukraine to design a pilot clinical trial addressing issues in SMA clinical trials.
A collaboration of a patient organisation with a pharmaceutical company that resulted in a major revision of the Informed Consent document and of the child and adolescent assent forms.
Novo-Nordisk, a pharmaceutical company, does user research with patients to enhance understanding of patients and to develop products that meet users’ needs.
A Patient Input Forum organised by Merck & Co to expose the company’s workforce to patients and caregivers and hear their perspective on living with Alzheimer’s disease.
A case of patient involvement into Phase I study design through sharing their views on the disease. The information helped the researchers to progress with designing a clinical trial.
Collaboration between patient advocates with academic institutions (Northwestern University and Emory University) and a pharmaceutical company Merck (Health Literacy and Healthcare Disparities Strategy group) to obtain a simplified label...
