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JOIN-HD Registry - Open for Enrollment

February 05, 2022

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

We are THRILLED to announce that JOIN-HD: Juvenile onset Huntington's disease Global Registry, is now openly enrolling young people and families!

Since publicly announcing this registry, we have been finalizing the platform while working with families to pre-register. We have also convened a Scientific Oversight Committee and Family Advisory Board to lend their expertise to this very important endeavor.

"With the Juvenile-onset HD initiative, we are building more than a patient registry...we are building a community," said Chief Investigator, Dr. Lauren Byrne. "Isolation and lack of understanding are problems that repeatedly come up in our interactions with families impacted by JoHD," she continued.

Background JOIN-HD is a global registry that collects experiences from both young people who have JoHD and their caregivers. All the information people add to the registry helps us understand more about JoHD. This will allow us to advocate for improvements to care, research and awareness. We hope JOIN-HD will be a platform that will encourage other scientists and clinicians to carry out much needed research into this devastating disease.

Ultimate Goals · Improve advocacy, care and support for young people with JoHD and for their families. · Create a network of leading healthcare JoHD professionals from lots of different specialties · Speed up research for the JoHD community. · Learn what people with JoHD and their families need so we can improve support and education programs. · Identify support, education and community resource connections for children and young people with JoHD and their families.

What Happens After You Register? Registry coordinator, Dr. Rebecca Mason will be holding one-on-one screening calls with each of the pre-registered families and will continue as more families register. Then, each family will receive log in credentials to complete this stage’s questionnaires, which include important demographic and background data.

More information about the Registry can be found on our Registry Page. For any additional information or questions, email registry@hdyo.org.

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