How to Participate
We are currently pre-registering (link to the About section) 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.
