RECRUITING

Longitudinal Endpoint Assessment of Disease Burden in HD

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

LEAD-HD is intended to collect and analyze self-reported health information from individuals with Huntington Disease (HD) or prodromal HD participating in a 24-month longitudinal natural history study using remote technologies.

Official Title

Longitudinal Endpoint Assessment of Disease Burden in HD

Quick Facts

Study Start:2024-06-25

Study Completion:2026-12

Study Type:Not specified

Phase:Not Applicable

Enrollment:Not specified

Status:RECRUITING

Study ID

NCT06475898

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years

Sexes Eligible for Study:ALL

Accepts Healthy Volunteers:No

Standard Ages:ADULT, OLDER_ADULT

Inclusion Criteria	Exclusion Criteria
* Be 18 years of age or older; * Be willing and able to provide informed consent electronically; * Self-report, when answering as a participant, that you have been diagnosed with HD by a doctor, or have undergone genetic testing and been found to carry the gene mutation responsible for HD but have not been clinically diagnosed with HD (prodromal HD); * Have the ability to answer online questions or direct someone else to enter answers for them; * Have the ability to ambulate independently and take care of some of your personal needs; * Have the ability to read and understand English; * Be willing to create a unique identifier based on personal demographic information; * Reside in the United States or its territories. Surveys can only be completed in the US. If you move outside of the US, you will no longer be able to participate; * Own or have access to an electronic device and secure internet connectivity	Pregnancy or breastfeeding Severe psychiatric disorders Active substance abuse Unstable medical conditions Inability to comply with study requirements

Inclusion Criteria

Exclusion Criteria

* Be 18 years of age or older;
* Be willing and able to provide informed consent electronically;
* Self-report, when answering as a participant, that you have been diagnosed with HD by a doctor, or have undergone genetic testing and been found to carry the gene mutation responsible for HD but have not been clinically diagnosed with HD (prodromal HD);
* Have the ability to answer online questions or direct someone else to enter answers for them;
* Have the ability to ambulate independently and take care of some of your personal needs;
* Have the ability to read and understand English;
* Be willing to create a unique identifier based on personal demographic information;
* Reside in the United States or its territories. Surveys can only be completed in the US. If you move outside of the US, you will no longer be able to participate;
* Own or have access to an electronic device and secure internet connectivity

Pregnancy or breastfeeding
Severe psychiatric disorders
Active substance abuse
Unstable medical conditions
Inability to comply with study requirements

Contacts and Locations

Study Contact

Lauren Falanga

CONTACT

800-487-7671

info@myhdstory.org

Principal Investigator

Jamison Seabury

PRINCIPAL_INVESTIGATOR

University of Rochester Center for Health + Technology

Study Locations (Sites)

Huntington Study Group

Rochester, New York, 14618

United States

Collaborators and Investigators

Sponsor: Huntington Study Group

Jamison Seabury, PRINCIPAL_INVESTIGATOR, University of Rochester Center for Health + Technology

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2024-06-25

Study Completion Date2026-12

Study Record Updates

Study Start Date2024-06-25

Study Completion Date2026-12

Terms related to this study

Additional Relevant MeSH Terms

Huntington Disease