Registry Study for Huntington's Disease
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial is a long-term, observational study focused on Huntington's disease (HD). It aims to gather detailed data to help researchers understand disease progression and identify key markers for future treatments. The study includes individuals who either carry the gene for HD, have relatives with HD, or do not carry the gene as a control group. Those with HD symptoms or relatives with HD might be suitable for this trial. Researchers may update participants' genetic status based on findings, but this information will remain unknown to them and their doctors during the study. As an unphased trial, this study offers participants the chance to contribute to groundbreaking research that could lead to new insights and treatments for Huntington's disease.
Do I need to stop my current medications for the trial?
The trial information does not specify whether you need to stop taking your current medications. It's best to discuss this with the trial coordinators or your doctor.
Why are researchers excited about this trial?
Researchers are excited about this trial because it aims to gather comprehensive data on Huntington's Disease (HD) by observing a global cohort. Unlike standard treatments that focus on managing symptoms, this observational study seeks to understand the disease's progression and genetic factors better. By collecting and analyzing data over time, the study hopes to uncover new insights that could lead to more effective therapies and improve the quality of life for those with HD. This approach could pave the way for breakthroughs in how we understand and tackle Huntington's Disease in the future.
Who Is on the Research Team?
Bernhard G Landwehrmeyer, MD, PhD
Principal Investigator
University of Ulm
Jamie Levey
Principal Investigator
CHDI Foundation, Inc.
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Enrollment and Baseline Assessment
Participants are enrolled and baseline assessments are conducted, including cognitive, motor, functional, and behavioral assessments
Longitudinal Data Collection
Ongoing collection of clinical data and biospecimens to develop a comprehensive repository for HD research
Follow-up
Participants are monitored for safety and effectiveness after initial assessments
What Are the Treatments Tested in This Trial?
Interventions
- Observational Study
Find a Clinic Near You
Who Is Running the Clinical Trial?
CHDI Foundation, Inc.
Lead Sponsor