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.
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
- Individual who have experienced HD symptoms before the age of 21 but were never formally diagnosed with JHD
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
JOIN‑HD: Our Overall Plan
JOIN‑HD is growing into a global research program designed with JHD families and for JHD families. Here’s what we’ve done so far, what we’re doing now, and where we’re headed next.
The Legacy Registry (Completed)
JOIN‑HD first launched on an early “legacy” platform. This helped us:
- Connect with families around the world,
- Understand what information they are willing and able to share, and
- Learn which questions and topics are most important to the JHD community.
This first version allowed us to build a strong foundation. All information from this stage will be securely moved into our new, upgraded system
Pre‑Enrollment for the Upgraded Platform (Happening Now)
We are now preparing to launch a new JOIN‑HD platform with:
- Easier navigation,
- Translated surveys,
- Improved data security,
- And a better experience for families.
Families can pre‑enroll now so you’ll be among the first to join when the new platform opens.
Phase 1 – Survey‑Based Data Collection (Launching Soon)
Once the upgraded platform goes live, JOIN‑HD will officially begin Phase 1.
Phase 1 focuses on hearing directly from families about life with JHD through a series of surveys. These questions were shaped by community priorities and will help researchers understand:
- which symptoms matter most,
- how JHD affects daily life, and
- what changes families most want treatments to target.
This phase can be completed entirely online.
Phase 2 – Additional Studies Within JOIN‑HD
After Phase 1 is underway, JOIN‑HD will expand to include optional additional research opportunities. These may include:
- biological sample collection (such as blood draws) to help identify biomarkers,
- more detailed studies to better understand JHD progression, and
- future research activities that build on the strong foundation created in Phase 1.
These steps will help make JOIN‑HD a research‑ready platform for future clinical trials and therapeutic development.
The Legacy Registry (Completed)
Old Platform to capture:
- Demographic info
- Links with the HD community
Pre-enrollment
Online form to capture:
- Registration of interest
- Demographic Info
Phase 1
Upgraded Platform to capture:
- JHD Experiences
- Medical History
- Symptom Tracking
Phase 2
New studies in upgraded platform to capture:
- Test new tools
- Biosample collection
- Biomarker testing
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
Dr. Emily Machiela-Leestma
HDYO Executive Committe
Dr Peggy Nopoulos
Co-Principal Investigator
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.
