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Update on JOIN-HD: the Juvenile onset Huntington's disease Global Registry

About JOIN-HD 

JOIN-HD is a global registry managed by the Huntington’s Disease Youth Organization (HDYO) that collects experiences from both young people who have JoHD and their caregivers. JOIN-HD will be carried out in 3 stages, with increasing information being collected at each stage. At stage 1, participant’s demographic data will be collected, along with information about any links they have with the HD community. At stage 2, information on both medical history and caregiver and patient experiences of JoHD will be collected. Stage 3 will incorporate a clinician-led interview and taking of family history. The information people add to the registry will help us understand more about JoHD.  

 

Goals of the Registry  

· Identify and engage people with JoHD in the collection of information that will speed up research into this disease. 

· Improve advocacy, care, and support for young people with JoHD and their families.  

· Contribute towards creating a multinational network of leading healthcare JoHD professionals.  

· Learn what people with JoHD and their families need so we can improve support and education programs.  

 

What Happens After Someone Registers?  

After participants express their interest in taking part, the registry coordinator will hold one-on-one screening calls with each of the families. Each participant will then receive login credentials to create an account on the JOIN-HD website and complete questionnaires, which at stage 1 include important demographic data and information on their links with the HD community. If the appropriate consents have been given, participants will be contacted with future research opportunities, including later stages of JOIN-HD when they become available.  

 

Later Stages  

Stages 2 and 3 of JOIN-HD will include additional questionnaires to gather more in-depth information about patient and caregiver experiences including medical history, life experiences, and family history. The required approvals will be obtained before these stages begin. Participants will receive new information sheets and be re-consented at each stage.  

 

The Team and Scientific Oversight Committee 

· Dr. Rebecca Mason – JOIN-HD Program Coordinator  

· Dr. Lauren Byrne – JOIN-HD Chief Investigator/HDYO Research Co-Chair 

· Dr. Bonnie Hennig-Trestman – HDYO Research Co-Chair 

· 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 

· 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. Oliver Quarrell – Consultant Clinical Geneticist and lead facilitator of the EHDN Pediatric HD Working Group 

· 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 

 

What You Can Do  

The HD community is excited to participate, to connect with each other globally, and to provide information that will propel future research for JoHD patients. We need help connecting with as many families as possible to achieve our goals. If you have families who are currently impacted, or have been impacted, by JoHD, please connect them with this registry and help them to understand the importance of participating. 

More information about the Registry can be found on our Registry Page. For any additional information or questions, email Rebecca at registry@hdyo.org

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