ONGOING OBSERVATIONAL TRIALS
Before participating in a study, talk to your health care provider and learn about the risks and potential benefits.
The objectives are to better document the psychosocial status and needs of caregiver of HD patients and understand the dyad functioning, facing the disease at various stages.
This study is looking at the relationship between caffeine and the course of HD in premanifest participants.
Enroll-HD is an international study looking at how the disease changes over time in different people. By tracking changes over the years it is hoping to better understand the course of HD. This can then lead to a quicker understanding if a new drug will be helpful leading to new therapies. The study is open to different stages of the disease, premanisfest, at risk or healthy controls. This will also depend on the study site.
The primary objective is to collect a high quality CSF (Cerebrospinal fluid) sample for evaluation of biomarkers and pathways that will enable the development of novel treatments for HD. The secondary objective is to generate a high quality plasma sample collection matching the CSF collections, which will also be used to evaluate biomarkers and pathways of relevance to HD research and development.
This study wants to confirm if Brain Derived Neurotropic Factor (BDNF) is a good biomarker for HD. The BDNF will be collected and measured from cerebrospinal fluid (CSF).
This international study will follow a group of people over time who have or are at risk of developing HD. Health information will be collected including medical history, blood and CSF samples. Participants will also undergo MRIs, cognitive and motor function tests. The information will be used to look at the natural history of HD and its biomarkers that are linked with changes in the CAG repeat
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.