HD Trialfinder is a clinical trials matching service: a way for individuals with Huntington’s disease, caregivers, healthy volunteers, and physicians to connect with current research studies. It includes an easy-to-use website and free call center staffed by trained HD clinical trial navigators. People with HD, care partners, and healthy volunteers are all needed today to participate in different aspects of HD research. By creating a profile and answering some basic questions about yourself or a friend, family member, or patient who is impacted by HD, you can match to studies and find contact information for nearby sites. You can also use HD Trialfinder to read about ongoing trials without entering any information.
You can begin by exploring the HD Trialfinder website or call center service staffed by trained HD Clinical Trial Navigators, available from 9 – 6 pm Eastern time. Fill out a “Request a Contact” form on the HD Trialfinder website or call 1-866-890-6612 to speak with a Navigator.
Your Participation Is Imperative
Through clinical trials, researchers are testing new ways to detect, treat and prevent Huntington’s disease. Recruiting clinical trial participants in a timely manner, as well as maintaining their participation in trials, is the greatest obstacle to developing the next HD treatment.
When you join a clinical trial, you have an opportunity to participate in vital research that could change the course of this disease and improve the lives of all those it affects. Your participation in clinical trials provides hope for today and promise for a future free of HD.
If you are thinking about joining a clinical trial, talk with your family and doctor about what is right for you.
If you encounter any issues with the HD Trialfinder website, please contact firstname.lastname@example.org or call 1-800-345-HDSA.
Researchers and Physicians: Include Your Study
Studies undergo an internal review by EmergingMed and HDSA to determine eligibility for posting in the database. Please fill out the HD Trialfinder Listing Form and return to Dr. Leora Fox, Assistant Director, Research & Patient Engagement, LFox@hdsa.org, and Kelly Andrew, Coordinator, Research & Mission Programs, KAndrew@hdsa.org.
Note that any HD-relevant study listed on clinicaltrials.gov will automatically populate HD Trialfinder. However, we strongly suggest reaching out to HDSA to include a patient-friendly lay description of the study. We are restricted to the headings provided in the HD Trialfinder Listing Form.
Where do trial listings come from?
Through involvement in the worldwide HD research community, HDSA keeps track of national, international, and local clinical trials so that the HD Trialfinder listing stays up-to-date with studies that need participants. Our sources include:
- Publicly available sources such as www.clinicaltrials.gov from the National Institutes of Health
- HDSA outreach to HD researchers nation-wide
- Exploratory studies funded through the HDSA Human Biology Project and HDSA Centers of Excellence
- Student and faculty researchers who apply here to list their study
What kinds of studies need participants?
There are many ways to get involved in HD research, whether that’s a drug trial, a local imaging study, a yearly observational visit, a phone call from home, or even driving a friend or family member to their study appointment. Some examples of HD Trialfinder studies include:
- National or local clinical trials of drugs
- Sample collection initiatives
- Observational trials
- Interviews and questionnaires
- Exploratory studies at local universities or clinics
- Brain scans
- Assessments of symptoms
- Devices or lifestyle interventions
How do I use HD Trial Finder?
- The View Trials button at the top of the page will allow you to view information about all trials.
- The Match to Trials button will allow you to find trials you are eligible for and obtain contact information.
Step 1: You will be prompted to create a profile with some basic information, or to log in if you already have a username and password.
Step 2: You will be asked to complete a brief questionnaire about yourself or the HD impacted individual.
Step 3: HD Trial Finder will compare your unique profile to its comprehensive, continually updated clinical trial database. You will be presented with a list of appropriate clinical trial match results to review.
Step 4: Click on the study title to read more about the study, or mouse over the phone icon to find contact information for the study coordinator.
You may also call 1-866-890-6612 to speak with or leave a message for a clinical trial navigator. Navigators are available between 9 am and 6 pm Eastern time.
Is my information private?
Who maintains HD Trial Finder?
HDSA works in conjunction with EmergingMed to maintain the site, program updates, and provide the navigator service.