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
Scientific Oversight Committee
HDYO’s JOIN-HD Global Registry is an innovative registry aiming to locate and understand the experiences of patients and caregivers impacted by Juvenile-HD. To tackle this endeavor, we need an equally innovative Scientific Oversight Committee comprised of world-renowned experts. Meet our SOC!
Dr. Martha Nance
Medical Director, Struthers Parkinson’s Center, Clinical Professor of Neurology at University of Minnesota and Director of HD Center of Excellences at Hennepin County Medical Center
Dr. Jean-Marc Burgunder
Professor of Neurology, Senior Consultant in Neurogenetics University of Bern, Head Swiss Huntington Center, Guümligen, Bern
Dr. Leon Dure
Professor & Director of the Division of Pediatric Neurology at the University of Alabama at Birmingham, USA
Helen Santini
Specialist JoHD Adviser for the HDA of England and Wales
Dr. Ferdinando Squitieri
Head of Neurology and Head of Huntington and Rare Diseases Unit, The Mendel Institute of Human Genetics and Scientific Officer and Co-Founder, Lega Italiana Ricerca Huntington, Rome, Italy
Dr. Peggy Nopoulos
Professor of Psychiatry, Pediatrics and Neurology and Chair and DEO, Department of Psychiatry, University of IOWA, USA
Dr. Benjamin Wilfond
Director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and Professor and Chief of the Division of Bioethics in the Department of Pediatrics at the University of Washington School of Medicine
Dr. Rebecca Mason
Clinical Trials Manager, ICON
