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, this registry collects information in a secure database 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.
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
What is the overall plan for JOIN-HD
JOIN-HD is structured into 4 different milestones. We are currently in the Pre-enrollment and Stage, which collects demographic information of JHD families from across the globe.
Moving into Stage 2:
We are actively building a new platform through Matrix (link to Matrix) to house both our Stage 1 and Stage 2 portions of the registry. This platform allows for translated surveys, greater analytics tools, better user interface for participants and leverage for growing the program. Once that is launched, we will be facilitating both Stages 1 and 2 simultaneously.
For those who have already completed their Stage 1 questionnaires, your data will be migrated over to the new platform. For those who have not completed those platforms, you will complete those in the new site.
We are currently submitting an ethics application for Stage 2 through the University College London. Ethics approval is important because it shows that adherence to ethical principles like informed consent and autonomy, safeguards the confidentiality of sensitive health information, and helps to prevent selection bias in studies that rely on registry data.
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.
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
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.
How Can We Help You?
Have a question about JOIN-HD, participating in the registry, research partnerships, or advocacy opportunities? Use the form below to reach out. A member of our team will review your message and respond promptly.
