For Immediate Release
Contact: Christopher Cosentino, Director of Marketing & Communications
Phone: (212) 242-1968 x229
Email: ccosentino@hdsa.org
HDSA’s HD TrialFinder is a free clinical trial matching service for Huntington’s disease that connects people with clinical studies in their area.
New York, NY (December 2015) – The Huntington’s Disease Society of America (HDSA) is pleased to announce that it has added a phone-based service to its repertoire of resources for the Huntington’s disease (HD) community. HD TrialFinder is the only comprehensive, constantly updated database of institutional review board-approved HD trials taking place across North America.
HD TrialFinder is now a web and phone-based clinical trial matching service that connects individuals with Huntington’s disease, caregivers, healthy volunteers and physicians with current studies. The trial listings in the HDSA HD TrialFinder come from publicly available sources, such as clinicaltrials.gov from the National Institutes of Health, and are supplemented by HDSA’s direct outreach to researchers and trial sites across the country to include their HD related clinical research studies in the HD TrialFinder database. Additionally, all HDSA-supported clinical research is now required to be placed in the HD TrialFinder database.
“HDSA is proud to launch this family-centered call center with EmergingMed,” said Louise Vetter, Chief Executive Officer at HDSA. “We hope that the addition of the Clinical Trials Navigator resource will help make the process of getting involved in clinical trials less overwhelming for HD families.”
In addition to the full suite of online resources, individuals can now call HDSA-trained Clinical Trial Navigators from 9:00 a.m. -5:00 p.m. eastern time. These “Navigators” answer questions about the trial process and connect individuals with trial sites based on their unique profile. Patients and caregivers will be encouraged to share their trial matches with their healthcare professionals to help decide whether a clinical trial is appropriate. Navigators will not recommend or endorse particular trials. Their role is to help individuals navigate HD clinical research opportunities by providing educational support.
“HD TrialFinder is an important tool to help empower the HD community to start a conversation with their physician about the clinical trial options available to them,” said George Yohrling, PhD., Senior Director, Mission and Scientific Affairs at HDSA, “We know that access to the novel research and treatments currently in development can provide hope to families that may feel there is none.”
HDSA’s HD TrialFinder can be accessed at www.HDTrialfinder.org or by calling toll-free, (866) 890-6612. 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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