For Immediate Release
HDSA’s HD TrialFinder Connects People with Clinical Studies in Their Area
New York, NY (April 7, 2015) – The Huntington’s Disease Society of America HD TrialFinder is a free, easy-to-use clinical trial matching service that connects individuals with Huntington’s disease, caregivers, healthy volunteers and physicians with current studies. The continuously updated database includes both interventional, observational and biomarker studies being conducted at clinical trial sites across North America.
The trial listings in the HDSA HD TrialFinder come from publicly available sources, such as clinicaltrials.gov from the National Institutes of Health. In addition, direct outreach is being made to researchers and trial sites across the country to include their HD related clinical research studies in the HD TrialFinder database. All HDSA supported clinical research will be required to be placed in the HD TrialFinder database.
“Currently, there are clinical research opportunities for every member of the Huntington’s community to join,” said Louise Vetter, Chief Executive Officer at HDSA. “From global initiatives to understand the disease to trials to evaluate the efficacy of specific treatments for HD symptoms, the field of HD science is providing an open door for families to help bring cures closer and we encourage everyone to get involved.”
How to use HD TrialFinder:
Step 1
Go to www.hdtrialfinder.org to create an account or log in if you already have a username and password.
Step 2
Complete a brief questionnaire about yourself or the HD impacted individual.
Step 3
Review your clinical trial match results. HD TrialFinder will compare your unique profile to its comprehensive, continually updated clinical trial database.
Step 4
Contact your nearest HD clinical center to speak with a study coordinator and get involved. As new clinical trial sites become active in your local area, HD TrialFinder will automatically notify you.
“Through clinical trials, researchers are finding new ways to detect, treat and prevent Huntington’s disease,” said George Yohrling, PhD., Senior Director, Mission and Scientific Affairs at HDSA. “Recruiting individuals to participate in research in a timely manner is the greatest obstacle to developing the next HD treatment.”
The HDSA HD TrialFinder only lists trials and studies that have Institutional Review Board (IRB) approval. Studies are also subject to additional review by the HDSA Scientific Advisory Board prior to being listed to ensure that listings only include credible trials and investigators.
“HDBuzz is focused on bringing high-quality information about Huntington’s disease research to HD families around the world,” said Jeff Carroll, PhD., Assistant Professor at Western Washington University and co-founder of HDBuzz.net. “HD TrialFinder is another key piece of the puzzle, and will serve as a great resource to connect HD families to ongoing trials. Improving the rate at which trials fill up brings closer the day that we’re all waiting for – effective treatments for HD.”
The technology and platform for the HDSA HD TrialFinder is provided by EmergingMed.
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call (800)345-HDSA.
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