Collaboration between patients and a Psoriasis Association representative with the ‘Focus on the Patient’ division from GSK, to understand the impact of psoriasis on the lives of patients, their...
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...
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.
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