Digital Measures for Clinical Trial Endpoints in Huntington's Disease

NCT ID: NCT07010705

Last Updated: 2026-01-27

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

100 participants

Study Classification

OBSERVATIONAL

Study Start Date

2025-06-20

Study Completion Date

2026-09-30

Brief Summary

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MEND-HD is a longitudinal study evaluating the feasibility of passive monitoring of gait and chorea in patients with HD and the meaningfulness of these outcomes for patients with HD and their care partners/support persons.

Participants will take part in four virtual visits with study investigators to answer survey questions on movement and cognition, perform in-home movement assessments, and take part in an interview regarding the meaningfulness of gait and chorea in their daily lives.

Participant and care partner interviews will be used for symptom mapping and qualitative data analysis to assess the relevance and impact of the targeted symptoms on the participant's daily life.

The study may be extended to 3 years to include yearly visits.

Detailed Description

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Conditions

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Huntington Disease Healthy

Study Design

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Observational Model Type

CASE_CONTROL

Study Time Perspective

PROSPECTIVE

Study Groups

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20 HD-ISS Stage 2

(CAG ≥ 40 and sign/symptom of HD) with or without a support person or family member

ActiGraph LEAP

Intervention Type DEVICE

The ActiGraph LEAP has received 510(k) clearance from the US FDA and offers extensive sensor collections, providing continuous digital measures of activity, sleep, mobility, and additional vital signs, including heart rate and variability, oxygen saturation, and skin temperature, in a single fit-for-purpose device.

Axivity AX6

Intervention Type DEVICE

The Axivity AX6 is a data logger capable of recording raw data from a suite of integrated sensors. It features a state of the art 6-Axis movement sensor measuring linear acceleration and angular velocity at high precision. All sensor locations and Orientations are identical to the AX3 for maximum compatibility. All data is stored in its raw, unaltered format on the embedded flash memory.

20 HD-ISS mild or moderate Stage 3

(CAG ≥40 and sign symptom and functional impact) with or without a support person or family member

ActiGraph LEAP

Intervention Type DEVICE

The ActiGraph LEAP has received 510(k) clearance from the US FDA and offers extensive sensor collections, providing continuous digital measures of activity, sleep, mobility, and additional vital signs, including heart rate and variability, oxygen saturation, and skin temperature, in a single fit-for-purpose device.

Axivity AX6

Intervention Type DEVICE

The Axivity AX6 is a data logger capable of recording raw data from a suite of integrated sensors. It features a state of the art 6-Axis movement sensor measuring linear acceleration and angular velocity at high precision. All sensor locations and Orientations are identical to the AX3 for maximum compatibility. All data is stored in its raw, unaltered format on the embedded flash memory.

20 Healthy controls

age and sex-matched

ActiGraph LEAP

Intervention Type DEVICE

The ActiGraph LEAP has received 510(k) clearance from the US FDA and offers extensive sensor collections, providing continuous digital measures of activity, sleep, mobility, and additional vital signs, including heart rate and variability, oxygen saturation, and skin temperature, in a single fit-for-purpose device.

Axivity AX6

Intervention Type DEVICE

The Axivity AX6 is a data logger capable of recording raw data from a suite of integrated sensors. It features a state of the art 6-Axis movement sensor measuring linear acceleration and angular velocity at high precision. All sensor locations and Orientations are identical to the AX3 for maximum compatibility. All data is stored in its raw, unaltered format on the embedded flash memory.

Interventions

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ActiGraph LEAP

The ActiGraph LEAP has received 510(k) clearance from the US FDA and offers extensive sensor collections, providing continuous digital measures of activity, sleep, mobility, and additional vital signs, including heart rate and variability, oxygen saturation, and skin temperature, in a single fit-for-purpose device.

Intervention Type DEVICE

Axivity AX6

The Axivity AX6 is a data logger capable of recording raw data from a suite of integrated sensors. It features a state of the art 6-Axis movement sensor measuring linear acceleration and angular velocity at high precision. All sensor locations and Orientations are identical to the AX3 for maximum compatibility. All data is stored in its raw, unaltered format on the embedded flash memory.

Intervention Type DEVICE

Eligibility Criteria

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Inclusion Criteria

* Age of 25-65 years.
* Genetically confirmed HD with CAG \>= 40 (HD-ISS Stage 2 or mild/moderate Stage 3)
* English speaking.


* Age of 25-65 years.
* English speaking.


* 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
Minimum Eligible Age

25 Years

Maximum Eligible Age

65 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Food and Drug Administration (FDA)

FED

Sponsor Role collaborator

University of Rochester

OTHER

Sponsor Role lead

Responsible Party

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Jamie Adams

Associate Professor - Department of Neurology

Responsibility Role PRINCIPAL_INVESTIGATOR

Locations

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University of Rochester Medical Center

Rochester, New York, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Sugitha Maheswaran, BS

Role: CONTACT

5857040344

Facility Contacts

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Sugitha Maheswaran, BS

Role: primary

5857040344

Other Identifiers

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1U01FD008429-01

Identifier Type: FDA

Identifier Source: secondary_id

View Link

STUDY00010159

Identifier Type: -

Identifier Source: org_study_id

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