HDYO will launch JOIN-HD, the Juvenile onset HD Global Registry, that will be open for Stage 1: Open Enrollment, starting February 4th.
JOIN-HD is a global registry that collects experiences from both young people who have Juvenile HD and their caregivers. All the information people add to the registry helps us understand more about it. This will allow them to advocate for improvements to care, research and awareness. We hope JOIN-HD will be a platform that will encourage other scientists and clinicians to carry out much needed research into this devasting disease.
The main goals are:
· Improve advocacy, care and support for young people with JoHD and for their families;
· Create a network of leading healthcare JoHD professionals from lots of different specialties;
· Speed up research for the JoHD community;
· Learn what people with JoHD and their families need so we can improve support and education programs;
· Identify support, education and community resource connections for children and young people with JoHD and their families.
What’s next for Stage 1?
HDYO will be openly reaching out to the community through a variety of methods: emails, social media, presentation at HDYO Congress, communication to partner organizations and clinicians, and more. Rebecca will be holding one-on-one screening calls with each of the pre-registered families and will continue as more families register. Then, each family will receive log in credentials to complete this stage’s questionnaires, which include important demographic and background data. They are also engaging directly with our Family Advisory Board to help us with marketing ideas and outreach to the families during this stage.
For more information, click on the image below: