Rare Disease Report

Global HD Organizations Launch Collaborative Advocacy Group

SEPTEMBER 20, 2017
Mathew Shanley
Earlier today, it was announced that 3 global Huntington’s disease (HD) patient advocacy organizations have teamed up to create a union to give those affected by the disease a voice in clinical research.

The European Huntington Association (EHA), Huntington’s Disease Society of America (HDSA) and Huntington Society of Canada (HSC) have formed the Huntington’s Disease Coalition for Patient Engagement (HD-COPE), which is intended to permit those directly affected by the condition an opportunity to express their desires as they pertain to future breakthroughs.

HD is known for the devastating physical, psychological and cognitive effects it can have on a patient. The genetic and neurodegenerative disorder progresses rapidly from dementia-like symptoms into a complete loss of muscle function. There is not currently a known cure and treatment options are limited to management of chorea-like symptoms.

Similar to the symptoms and treatment of HD itself, patient input into drug development and clinical trial design is not well-organized. HD-COPE plans to change that by providing regulators, industry, and researchers with a more coordinated and consistent means to share patients’ input, thereby improving clinical trail 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 the Huntington’s Disease Society of America in a press release.

“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.”

HD-COPE’s advisory board includes the senior staff from each of the member organizations, and plans to provide guidance and direction to clinical research leaders on general issues involving patient feedback, community needs, and research recruitment. It will also direct and manage a global HD-COPE Team of HD 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. 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.

Two different patient-advocate teams will be organized via HD-COPE – 1 in North America and 1 in Europe – and members will be given the opportunity to provide perspective at meetings with regulators, pharmaceutical companies, and researchers.

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