Note: This webinar took place on 29 October 2018. You can find a video recording and the presentations used during the webinar below. Webinar introduction Amongst other profound changes and consequences,...
Note: This webinar took place on 28 June 2018. You can find a video recording and the presentations used during the webinar below. Webinar introduction Community advisory boards (CAB) are an...
Note: This webinar took place on 8 February 2018. You can find a video recording and the presentations used during the webinar below. Webinar introduction A patient registry is an organised...
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.
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