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Juvenile onset Huntington’s Disease Registry

December 22, 2020

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Juvenile onset Huntington’s Disease Registry

This section is here to help you understand our new global project for those impacted by Juvenile Huntington’s Disease (JHD).

JoHD Registry

Huntington disease can occur in individuals at any age in their life - young or old. When someone who is 20 or younger develops symptoms of Huntington’s disease, they are classed as having Juvenile Huntington’s disease (JHD). So effectively ‘JHD’ means a young person with Huntington’s Disease (HD).

You can find out more about Juvenile Huntington’s Disease (JHD) on our basics of JHD article. In this project we talk about Juvenile ONSET Huntington’s Disease (JoHD). This is another way of describing Juvenile Huntington’s Disease (JHD) but we wanted to help everyone understand that adults can have JHD. If someone is 32 but because started having symptoms when they were 17, they would have Juvenile Huntington’s Disease (JHD). Onset just helps say that symptoms of HD started when they were a young person.

What is JoHD Registry?

The JoHD Registry is a global project and research study that collects experiences from both young people who have JHD and their caregivers. All of the information that people add to the registry helps us understand more about JHD so that we can advocate for improvements to care, research and awareness. The information is also anonymous so that those taking part feel safe telling us about their experiences. Their personal details (name, age, country the live in etc) is not held in the same database.

The ultimate goal of a JoHD registry is to:

  • 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 specialities
  • Speed up research for the JoHD community.
  • Learn what people with JoHD and their families need so we can improve support and education programmes.
  • Identify support, education and community resource connections for children and young people with JoHD and their families.

What is a Registry?

JoHD Registry is a type of project called a Patient Registry. These are databases that collect answers to a set of questions from those affected by a particular condition.

The European Medicines Agency (EMA) and The Food and Drug Administration (FDA) are two agencies (EMA covers European Union counties and FDA covers United States of America) who are responsible for ensuring that any medicines, devices or studies are being done safely, effectively and that those taking part are informed and protected. EMA and FDA both have guidelines on how Patient Registry projects should be managed because they support that those affected by conditions are vital to finding new treatments and care. HDYO has made sure that we are working to those guidelines.

Who is involved in JoHD Registry

HDYO has partnered with pharmaceutical companies, HD Research community and networks, HD patient advocacy organisations and HD families to design studies specific to the needs of those with JoHD. HDYO has been working on the framework of two registries for nearly two years now. This work has included confirming the need from the community, finding the right platform and recruiting a best-in-class medical advisory board.

HDYO Research committee is the team who are managing the JoHD Registry, you can find out more about our research committee on the about us page.

Who can participate?

You can take part in the JoHD Registry if one of the below describes you:

  • If you are someone who has been diagnosed with JHD
  • If you are a caregiver to someone who have been diagnosed with JHD
  • If you were a caregiver to someone who had been diagnosed with JHD

How do we get involved?

HDYO will launch the registration platform (remember we said that all personal information is not on the main registry platform) at the end of January 2021. If you would like us to email you when it goes live then send an email to registry@hdyo.org

The main patient registry will go live in March 2021 and those who have completed the registration process will be contacted with a unique link to allow them to access JoHD Registry.

If you have any questions about the project then you can send a question using the Ask a Question button or by emailing registry@hdyo.org

JoHD Registry