Recruitment for this EU-funded observational study, which is designed to provide new insights into whether behaviour and lifestyle factors are linked to HD genetic risk and progression, finally got underway in February following delays caused by the pandemic.
DOMINO-HD is split into two phases; phase 1 is looking at methods for reliably measuring lifestyle factors (physical activity, sleep, diet) in people with Huntington’s disease (HD) in a way that disrupts their normal life as little as possible. Phase 2 will use the information gathered in phase 1 to measure these lifestyle factors in people with HD over 12 months. The main purpose of DOMINO-HD is to look at how sleep, nutrition and physical activity impacts the progression of Huntington´s disease so as to develop new ways to support and manage fundamental aspects of HD patients. The study will also explore how digital technologies, such as wearable fitness trackers, can be used to support people with HD.
Estimated Study Completion Date: March 2022
18 Years and older
(Adult, Older Adult)
Accepts Healthy Volunteers:
Adults (aged over 18 years) with a diagnosis of Huntington’s Disease confirmed by genetic testing, who are able to walk unassisted and are participating (current or newly enrolled) in the Enroll-HD study.
- Diagnosis of juvenile onset Huntington’s Disease (HD)
- History of co-morbid neurological conditions such as multiple sclerosis or stroke
- Acute (within 1 month) orthopaedic conditions such as an ankle sprain or fracture
- Severe medical conditions such as unstable or progressive heart disease, uncontrolled diabetes, severe liver, kidney or thyroid dysfunction, or similar medical conditions
- Any acute or unstable psychiatric condition
- Unable to tolerate long-term wear of activity monitor
- Inability or unwillingness to give written informed consent
- No access to a smartphone
- Not willing to allow the research team to install Apps on their smartphone related to the study
Address: Ulm, Baden-Württemberg, Germany, 89081
Institute of Psychiatry and Neurology, Warsaw
Address: Jana III Sobieskiego 9, Warszawa, 02-957
Tel: +48 694 904 208