In the early days, many research groups relied on reaching out to hospitals to find patients. However, as awareness of ethical research practices grows, we’ve seen a rise in the development of clinical and patient registries. These registries are ethically binding and governed by strict laws to protect patient confidentiality. Participants have maximum autonomy over their information, including the ability to decide how it’s used and to withdraw from studies at any time. These measures ensure that participants’ rights and privacy are respected throughout their involvement in research.

Registries also play a key role in connecting individuals and families with clinical trials. By participating in these trials, members of our community contribute important data, including biomarker tests, imaging results, and genomic information. This information helps researchers save time and resources that can be better spent finding treatments and cures. Furthermore, registry data can lead to new research ideas and help answer questions that may not be possible to explore through traditional clinical trials. This shows just how crucial registries are in furthering our understanding of Huntington’s disease.

Discover two global registries dedicated to uniting pharmaceuticals, clinicians, researchers, and families in the fight against Huntington’s disease. These initiatives aim to create comprehensive registries that empower the community and advance research, offering support and hope to those affected. Click below to explore these vital resources.


Enroll-HD is a clinical research platform that aims to be a resource to the broader Huntington’s Disease community including the researchers, advocates in addition the families living with the disease. With about 25,000 participants, Enroll HD is world’s largest observational study on Huntington’s Disease. Funded by CHDI Foundation, nonprofit biomedical research organisation, Enroll-HD aims at accelerating the process of finding a disease-modifying therapy for Huntington’s Disease, by enhancing the understanding of the disease, support research globally and to improve clinical care for individuals living with Huntington’s Disease.


The Map-HD registry, led by the Huntington’s Disease Network of Australia (HDNA), seeks to understand the prevalence of Huntington’s disease (HD) in Australia and enhance care accessibility for affected families. Established in June 2020, this initiative aims to unite Australian families during a promising era with potential disease-modifying therapies on the horizon. By recognizing community needs, fostering clinical networks, and assessing the economic impact of HD, the registry strives to improve healthcare and employment outcomes.


For families of children living with Juvenile Huntington’s disease. This initiative is looking to build a global community of families impacted by Juvenile Huntington’s disease and improve advocacy measures for these families. This registry is an initiative by the Huntington’s Disease Youth Organisation HDYO to build a global community for families with Juvenile Huntington’s disease, to improve awareness on Juvenile Huntington’s Disease and most importantly to facilitate future research leading to a disease modifying therapies in future.