Global Huntington’s Disease Patient Advocacy Organisations Unite to Form Huntington’s Disease Coalition for Patient Engagement (HD-COPE)

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), a new global coalition to give families who are affected by Huntington disease (HD) a direct and impactful voice in HD clinical research.

HD-COPE will replace the current ad hoc approach to incorporate the patient-voice in therapeutic development efforts in Huntington’s disease with a coordinated and consistently knowledgeable mechanism to contribute HD community experience to regulators, industry and researchers. 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.

The HD-COPE Advisory Board, comprised of 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 of HD family representatives. Team members will be a select group of volunteers from HD families in each member region who meet the expectations of experience and availability to participate in global clinical research meetings.

“The most effective clinical research meets the therapeutic needs that patients and families have personally identified,” said Louise Vetter, President and Chief Executive Officer of the Huntington’s Disease Society of America. “HD-COPE will ensure that HD affected families are true partners in clinical research by expanding their role from simply being trial participants to  ensuring that the trials have their perspectives, values and thoughts on risks and benefits incorporated from the start.  It fundamentally changes HD clinical research from being ‘for’ or ‘about’ HD families to being ‘with’ and ‘by’ them.”

“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.”

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 organizations 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 organizing two patient advocate teams, one in North America and one in Europe.  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.

 

About the European Huntington Association

The European Huntington Association (EHA) is a member of EFNA. EHA is a non-profit umbrella organization representing 43 member HD associations from 28 countries and more than 30.000 HD affected from all over Europe.  Their main objective is to connect the lay and professional HD communities across borders and develop better services and research together.  To learn more visit their webpage: www.eurohuntington.org

To learn more about HD-COPE and the role of families from Europe in clinical research, please contact Astri Arnesen at: astri@eurohuntington.org or +4790202031

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