COSYN partner, EGAN has set an European CAB, consisting of people with both experience-based and medical/scientific knowledge. They participated in the development of deliverables and advice on scientific, ethical, communicational and implemental issues from a European patient perspective. Vereniging Samenwerkende Ouder en Patient (VSOP) acted on behalf of EGAN, and worked together in this project with other European patient organizations and individual expert parents.
It was important to have the patient view on genetics-based personalised medicine in the field of psychiatric disorders and the early therapeutic interventions connected to it. It was also important to have their views on the relationship between genetic predisposition and issues like social stigmatization and other societal consequences, influence on reproductive decision making, etc.
It was important for the aims and context of COSYN to have the patients’ perspective on the role of the pharmaceutical therapy COSYN aims to develop, relates to the overall treatment of their psychiatric disorders and their quality of life. During the COSYN project we organised an open conference for patient organisations and their caregivers to present results so far, discuss further steps and timeline and ethical issues related.
The CAB was part of the Management team and involved in the share of data, samples and knowledge and provided requested and unrequested advice.