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HD Coalition for Patient Engagement (HD-COPE)

HD-COPE is a new international collaboration between the Huntington Society of Canada, the Huntington Disease Society of America (HDSA) and the European Huntington Association (EHA). HD-COPE was formed to replace the current ad hoc approach to incorporating the patient-voice in global therapeutic development efforts for HD. The group’s role is to communicate the HD community’s experiences and needs to regulators, industry and researchers.

In February 2018, the first HD-COPE meeting was held in London, England with four Canadians, six Americans and 10 Europeans who are personally affected by HD. The meeting included clinical trial training, a visit to a research lab and a meeting with a pharmaceutical company to give family members impacted by HD the opportunity to provide first-hand knowledge of the challenges of living with HD. The support of donors like you has helped to ensure that this is the first of many interactions for the group and that it will grow over time to include more family members and HD organizations from around the world.

HD-COPE from European Huntington Association.

More Information About HD-COPE

  • HD-COPE is a new coalition formed by the European Huntington Association, the Huntington’s
    Disease Society of America and the Huntington Society of Canada (EHA, HDSA and HSC) that is
    working to make sure that the drug development industry is including family insight and
    feedback into their work early in the clinical trial protocol development process.

    • The goal is to expedite discovery to new HD therapies by ensuring the patient voice and
      the burden of HD is clearly understood when developing clinical trial protocols.
  • Currently 20 representatives from HD families in North America and Europe (the HD-COPE
    Team) are trained on the drug development process and have started to engage with
    representatives at leading pharmaceutical companies to answer their questions about the
    needs of HD families and the burden of HD.

    • This HD-COPE Team understands the process and vocabulary of drug development so
      that their dialogue with industry is most effective and efficient.
  • The HD-COPE Team works with all clinical development teams to ensure that they have the
    appropriate understanding of the needs of HD families.

    • HD-COPE does not endorse specific companies, drugs or scientific approaches.
  • The HD-COPE Team members are not experts in HD research or care.
    • They know what it means to be a part of an HD family and they share that knowledge
  • The HD-COPE Team first met in London on February 2nd and 3rd for a training, and the Team
    has provided insight on the HD family experience to Roche.

    • With so many companies working on developing new HD therapies, the HD-COPE Team
      is ready, eager and prepared to share their insights on the needs of HD families.

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