HD Trialfinder faqs

HD Trialfinder Frequently Asked Questions

What is HD Trialfinder?

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. At www.hdtrialfinder.org, you can read about ongoing studies, and by creating a profile for yourself, a loved one, or a patient, you can find out which nearby studies you are eligible for, and locate contact information to get involved directly.

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
• Student and faculty researchers who apply at hdsa.org 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 global 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?
Your details are anonymous. HD Trialfinder asks for your location and some brief medical information to help match you to trials. HDSA will not have access to your name or contact information unless you specifically request HDSA to contact you. You can read our full privacy policy by clicking here.

Who maintains HD Trial Finder?
HDSA works in conjunction with EmergingMed to maintain the site, program updates, and provide the navigator service.