Stakeholder engagement

HD and SCA patients and families are the most important stakeholders of the CureQ proposal. The close interactions established over the years between the HD and SCA research community and patient foundations will be intensified by national and local meetings and presentations. Joined meetings with the Vereniging van Huntington, Campagneteam Huntington, ADCA/Ataxie Vereniging Nederland and the Hersenstichting and patient representatives with all consortium members, including Advisory Board members, will enable a unified outreach to both affected patients and families. Students, PhD students and others will be trained via workshops on presenting their results to a general public. The patient organizations represent the families affected by HD ans SCA and will ne actively involved in dissemination, communication, output and outreach as described below and in WP7.

HD  and SCA researchers and clinicians. Consortium Network Meetings are scheduled throughout the project to review progress and provide a platform for the early and mid-career scientists to regularly present their work and get feedback. These meetings will be open for all scientists working in the Dutch HD and ADCA/Ataxia community, ranging from iPSC culture workshops to interdisciplinary hackathons between data generators (clinic/wet lab) and AI and data integrators (HBO’s). Similarly, the Dutch HD Research Network symposia (with board members Reits, van Roon-Mom,  Oosterloo and Kampinga) and Dutch Ataxia Research Symposia (organized by consortium members  Warrenburg, Verbeek and Donné–Op den Kelder) will continue and expand their meetings with all consortium members. In addition, the clinical partners within CureQ will arrange separate meetings to discuss recruitment, individual cases (particularly the intermediate carriers), and care pathways.

Scientists and representatives from Dutch biotech including Vico, uniQure and VectorY will participate in the meetings and symposia of the consortium, including scientific meetings by the different WP workgroups, yearly symposia, and meetings with all stakeholders including patient foundations and families. The biotech will co-organize workshops on drug development, regulatory affairs, clinical trial design and assays. Participating in outreach to community (meetings, social media) is seen as being essential by Dutch biotech working on potential therapies.  Cooperation with the ELSI Servicedesk is of mutual interest: the Servicedesk will learn about the issues the consortium members of our project are confronted with and vice versa they will benefit of the expertise of the core team of the ELSI Servicedesk, who will offer tailor-made advice on research-related questions that may arise during the research project, such as informed consent procedures, the use of data and samples of patients, incidental findings, correctly dealing with large amounts of human tissue and genetic data.