The European Huntington Association (EHA), Huntington’s Disease Society of America (HDSA) and Huntington Society of Canada (HSC) are proud to announce the formation of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE), in an effort to give families who are affected by Huntington disease (HD) a direct and impactful voice in HD clinical research.

The purpose of HD-COPE is to add quality to all aspects of clinical trials through engaging patient representatives. The establishment of HD-COPE seeks to avoid the present ad hoc approach and instead provide a coordinated and knowledgeable mechanism to contribute HD community experience to regulators, industry and researchers when needed. Patient-oriented input is highly needed to meet the needs of the patient community, speed up recruitment and increase retention for all HD clinical trials.

An HD-COPE Advisory Board, represented by the senior staff of each member organization will provide counsel to clinical research leaders on broad issues involving patient feedback, community needs and research recruitment. The advisory board will also manage a global HD-COPE Team. Team members will be volunteer HD community representatives from each member region who are interested in and qualified to be involved in the development of HD clinical research projects.
“By expanding patient involvement beyond participation in trials as a subject, HD-COPE seeks to ensure that clinical research means research carried out ‘with’ or ‘by’ members of the community, rather than it being ‘to’ or ‘about’ them,” said Louise Vetter, HDSA’s President and Chief Executive Officer.

Astri Arnesen, President European Huntington Association added “Our voice matters and by uniting in a global coalition, we will make our voice stronger. I am convinced that contribution from HD-COPE will add value to all aspects of clinical research because we have a unique perspective and knowledge about HD.”

“The global Huntington disease community is relatively small compared to other disease communities, which has created the need for us to work collaboratively with no borders.  HD-COPE is an example of global HD lay organisations being the conduit of information between pharma and the HD communities to ensure the success of clinical trials.  I am optimistic that the facilitation of equal collaboration between the key stakeholders will expedite the path to viable treatments for HD,” said Bev Heim-Myers, Chief Executive Officer of the Huntington Society of Canada.

HD-COPE is now organising two patient advocate teams, one in North America and a European one. Collectively, the team will be comprised of approximately 20 members (4 from Canada, 6 from the United States and 10 from Europe). HD–COPE team members will provide their HD patient or caregiver perspective at meetings with regulators, pharmaceutical companies and researchers at meetings organized by the HD-COPE Advisory Board. Each member organization is responsible for recruiting team members from their respective regions.

For more information contact Dina De Sousa on dina@eurohuntington.org