Digital Measures for Clinical Trial Endpoints in Huntington's Disease

Launched by UNIVERSITY OF ROCHESTER · May 30, 2025

Keywords

ClinConnect Summary

The MEND-HD trial is studying how well we can monitor movement problems, like walking and involuntary movements (called chorea), in people with Huntington's Disease (HD). The goal is to understand how these issues affect daily life for both patients and their caregivers. Participants will take part in four virtual visits where they will answer questions about their movement and thinking skills, do some simple movement tests at home, and discuss how these symptoms impact their daily activities.

To be eligible for this study, you need to be between 25 and 60 years old, speak English, and, if you have HD, have a confirmed diagnosis at an early stage. Caregivers or family members of those with HD can also participate. During the study, you’ll have the chance to share your experiences, which will help researchers better understand the challenges faced by those living with HD. This trial is not yet recruiting participants, but it’s an important step in learning how to improve care for people with Huntington's Disease.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• * Inclusion Criteria for participants with adult-onset HD:
• • Age of 25-60 years.
• • Genetically confirmed HD (HD-ISS Stage 2 or early Stage 3)
• • English speaking.
• Inclusion Criteria for control participants:
• • Age of 25-60 years.
• • English speaking.
• Inclusion Criteria for support persons:
• • Self-identified support person or family member of the enrolled participants with HD.
• • 18 years or older
• • English speaking.
• Exclusion Criteria:
• • Diagnosis of juvenile-onset HD.
• • History of co-morbid neurological disease or disorders such as stroke, multiple sclerosis, or moderate to severe
• • Traumatic Brain Injury.
• • Use of an assistive device for ambulation.
• • Montreal Cognitive Assessment (MoCA) score of 18 or lower
• • Acute or chronic medical conditions that significantly impact gait or mobility in the opinion of the investigator, e.g. ankle sprain or fracture, or any orthopedic,
• • cardiovascular or psychiatric disease.
• • Pregnancy
• • Cannot be enrolled into a blinded intervention trial at Baseline