We are THRILLED to announce that Stage 1 of JOIN-HD: the Juvenile onset Huntington's disease Global Registry is now open to enrollment for young people with JoHD and their families!
Participants self-enroll in this registry, and, at stage 1, no clinical information is collected.As a clinician, we invite you to inform your JoHD contacts of this registry. You will not enroll or refer patients, and therefore do not have to involve your local ethics or research review committees. More details about this registry are below:
JOIN-HD is a global registry managed by the Huntington’s Disease Youth Organization (HDYO) that collects experiences from young people who have JoHD and their caregivers. JOIN-HD will be carried out in 3 stages, with increasing information collected at each stage. At stage 1, participants’ demographic data will be collected, along with information about their links with the HD community. At stage 2, information on 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 collecting 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 global 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 individuals 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 consent has been given, participants will be contacted with future research opportunities, including later stages of JOIN-HD, when they become available.
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 – HDYO Research Manager, JOIN-HD Coordinator, UK.
Dr Lauren Byrne – JOIN-HD Chief Investigator/HDYO Research Co-Chair, UK.
Dr Bonnie Hennig-Trestman – HDYO Research Co-Chair, USA.
Dr Martha Nance – Medical Director, Struthers Parkinson’s Center, Clinical Professor of Neurology at the University of Minnesota, and Director of HD Center of Excellence at Hennepin County Medical Center, USA.
Dr Jean-Marc Burgunder – Professor of Neurology, Senior Consultant in Neurogenetics University of Bern, Switzerland.
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, UK.
Dr Oliver Quarrell – Consultant Clinical Geneticist and lead facilitator of the EHDN Pediatric HD Working Group, UK.
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, USA.
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.
What You Can Do
The HD community is excited to participate, connect with each other globally, and 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 or have been impacted by JoHD, please let them know about this registry and help them to understand the importance of participating.
More information about the Registry can be found at www.join-hd.org. For any additional information or questions, email firstname.lastname@example.org.