The Global Registry for Juvenile onset Huntington’s Disease




Roche, PTC Therapeutics, UniQure and Novartis


Currently unknown

JOIN-HD is a worldwide registry for families affected by Juvenile onset Huntington’s Disease (JoHD), which aims to shed light on this diagnosis, bring together those impacted by JoHD, increase awareness and knowledge about this condition, facilitate research and help advocate for better care.

Juvenile onset Huntington’s Disease is diagnosed when a 20-year-old person or younger develops unequivocal HD symptoms. The study was created to help researchers find people with JoHD, so that they can learn more about this rare HD sub-group, have a comprehensive overview of this condition, answer specific research questions, and identify persons who may wish to participate in further research.

JOIN-HD is conducted online, so all information collected will use web-based questionnaires. The study will include multiple stages and is currently open in Stage 1 (Pre-Register). In Stage 1, participants will be asked to give their consent to take part in JOIN-HD and give information about the connections they have with the HD community.

A registry coordinator will help families during this phase. Stage 1 participants will be invited to take part in future stages of JOIN-HD, once they become available. The pre-register form is available in Dutch, English, German, Italian, Portuguese, Russian and Spanish. Although the JOIN-HD study is only available in English for now, it will be translated to other languages.

If you have any questions about JOIN-HD, you can get in touch by emailing

Ages Eligible
for Study:

Persons with JoHD, their caregivers, and persons who were caregivers of someone with JoHD

Sexes Eligible
for Study:


Accepts Healthy Volunteers:


  • Having symptoms consistent with Juvenile onset Huntington’s Disease
  • Being the caregiver of someone who has symptoms consistent with Juvenile onset Huntington’s Disease
  • Being a previous caregiver of someone who had symptoms consistent with Juvenile onset Huntington’s Disease
  • Individuals who do not meet the inclusion criteria
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An inactive substance or treatment that looks the same as, and is given in the same way as, an active drug or intervention/treatment being studied.

The placebo effect is a psychological effect that causes people to feel better even if they’re taking a pill that doesn’t work. (from

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The stage of a clinical trial studying a drug or biological product, based on definitions developed by the U.S. Food and Drug Administration (FDA). The phase is based on the study’s objective, the number of participants, and other characteristics. There are five phases: Early Phase 1 (formerly listed as Phase 0), Phase 1, Phase 2, Phase 3, and Phase 4. Not Applicable is used to describe trials without FDA-defined phases, including trials of devices or behavioral interventions.

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Inclusion Criteria

A type of eligibility criteria. These are the reasons that a person is allowed to participate in a clinical study.

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CAG repeat

The stretch of DNA at the beginning of the HD gene, which contains the sequence CAG repeated many times, and is abnormally long in people who will develop HD. (from

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Exclusion Criteria

A type of eligibility criteria. These are reasons that a person is not allowed to participate in a clinical study.