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 impacted by Juvenile Huntington’s Disease (JHD). Open to people currently and previously affected by JHD and their caregivers, the registry collects information to build understanding of the community’s journey to guide advocacy for better care, research, and awareness.
By joining, participants help researchers see how JHD changes over time, what challenges families face, and what kinds of support or treatments may help. The registry can also connect scientists with potential study volunteers and ensure future research reflects the real needs of the JHD community.
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.
Individuals who have experienced HD symptoms before the age of 21 but were never formally diagnosed with JHD.
What is a registry?
A research registry is a secure database that collects health information from people who share a certain condition or experience. By gathering this information in one place, researchers can better understand the condition, track patterns over time, and work toward improved treatments and support.
Goals of JOIN-HD
Our goal is to gather detailed perspectives and experiences from families around the world to help researchers, doctors, and caregivers improve care and work toward future treatments
Facilitate Future Research
Build a Global Community of Families Impacted by JHD
Facilitate Future Research
Who’s involved?
JOIN-HD is managed by the Huntington’s Disease Youth Organization (HDYO). The HDYO team involved in the registry are:
Dr. Lauren Byrne
JOIN-HD Chief Investigator
Dr Casey Edwards
JOIN-HD Coordinator
Jenna Heilman
HDYO Executive Director
Dr. Bonnie Hennig-Trestman
HDYO Research Committee Co-chair
Dr Kelly Atkins
HDYO Research Committee Co-chair
The HDYO Research Committee
In addition to the HDYO team, JOIN-HD’s Scientific Oversight Committee and Family Advisory Board provide invaluable input to the registry.
