About JOIN-HD
While Huntington’s Disease (HD) most frequently begins in adulthood, it can occur at any age – young or old. When someone who is 20 or younger develops HD symptoms, they are classed as having Juvenile Huntington’s Disease (JHD).
What is JOIN-HD
JOIN-HD is a global registry for families affected by Juvenile Huntington’s Disease. Open to people who have JHD and their caregivers, all the information added to the registry will help increase understanding of JHD. This will allow us to advocate for improvements to care, research, and awareness. We hope JOIN-HD will be a platform that encourages other scientists and clinicians to conduct much-needed research.
Who can take part?
Someone who has symptoms consistent with JHD, the caregiver of someone who has symptoms consistent with JHD, or a previous caregiver of someone who had symptoms consistent with JHD.
What is a registry?
A database collects information about people with a specific condition or disease. Researchers can use registry data for observational studies to answer important health questions.
