European and North American Huntington’s Advocacy Groups Launch Joint Initiative

Three Huntington’s disease (HD) patient advocacy organizations in Europe and North America recently launched a collaborative effort to give patients and the HD community more of a voice in clinical research.

The newly formed Huntington’s Disease Coalition for Patient Engagement (HD-COPE) aims to give Huntington’s patients a platform to express their desires regarding future discoveries in Huntington’s therapies.

HD-COPE is a joint initiative of the European Huntington Association (EHA), the Huntington’s Disease Society of America (HDSA), and the Huntington Society of Canada (HSC).

HD-COPE will be organized in two different patient-advocate teams – one in North America and one in Europe – so that members will have the opportunity to voice their wishes at meetings with researchers, industry leaders, and policy regulators.

Huntington’s disease is known for its devastating impact on the patient and the family or caregivers. There is no cure yet for the disease, and treatment options are limited to the management of chorea-like symptoms (chorea is a neurological condition where people often make involuntary jerky movements, paticularly in the face, hips, and shoulders).

In addition, drug development and the design of clinical trials has not yet been fully optimized.

To help contribute to this problem, HD-COPE plans to provide regulators, researchers, and industry heads with a more coordinated and consistent means to share patients’ input, thereby improving clinical trial design, patient recruitment, and patient retention.

“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 HDSA, according to a Rare Disease Report news story written by Mathew Shanley.

“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,” Vetter said. “It fundamentally changes HD clinical research from being ‘for’ or ‘about’ HD families to being ‘with’ and ‘by’ them.”

HD-COPE’s advisory board will include members from all three co-founder organizations and will guide and direct clinical research on issues related to patient feedback, community needs and wishes, and research recruitment. The organization will also manage a global HD-COPE team of Huntington’s family representatives.

“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,” said Bev Heim-Myers, chief executive officer of the HSC.

“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,” she said. “I am optimistic that the facilitation of equal collaboration between the key stakeholders will expedite the path to viable treatments for HD.”

To learn more about HD-COPE in Europe, please contact Astri Arnesen at [email protected] or by calling +4790202031.

To learn more about HD-COPE in the United States, please contact George Yohrling, PhD, at [email protected] or call 212-242-1968, Ext. 211.

To learn more about HD-COPE in Canada, please contact Bev Heim-Myers at [email protected] or by calling 1-800-998-7398.