How to Participate
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).
We are currently pre-registering eligible individuals to participate in the JOIN-HD registry. We are currently building and migrating our database to a new platform through Matrix to help make the experience more convenient for participants as well as enhance research metrics. Because of that transition, we are encouraging interested individuals to pre-register, so when the migration is finalized, we can notify you of the next steps.
Who can take part?
Anyone impacted by JHD can participate. That includes
- Caregivers of people living with JHD.
- People diagnosed with JHD.
- Caregivers of individuals who have passed away.
- People who have experienced HD symptoms before the age of 21 but were never formally diagnosed with JHD.
