Background The recruitment of clinical trial participants in a timely manner is one of the greatest obstacles to developing the next Huntington’s disease (HD) treatment. In the past, if individuals were interested in trials, they were directed to resources such as Clinicaltrials.gov. Unfortunately, sites like this are outdated, difficult to understand and often do not provide a direct connexion to a study site coordinator. All of these are unnecessary barriers to trial participation.
Aim HDSA identified the lack of a patient friendly, reliable clinical trial resource as a critical need in the HD community so we collaborated with EmergingMed to develop a new resource called HD Trialfinder.
Methods HD Trialfinder has both web-based and telephone components. The web-based portion is a free, easy-to-use clinical trial matching program that connects individuals affected by HD with current HD studies in North America. It can be found at www.HDTrialfinder.org. The second component of HD Trialfinder is a call centre. The call centre (1–866-890–6612) is staffed during normal business hours by professional trained “Clinical Trial Navigators” that assist families that need extra assistance. The HD Trialfinder is updated daily to ensure its database includes only HD studies that are currently recruiting. The trial listings in the HD Trialfinder come from publicly available sources, such as Clinicaltrials.gov. In addition, HDSA makes direct outreach to researchers and trial sites across the United States to include HD related clinical research studies that may are not listed in Clinicaltrials.gov. The HD Trialfinder database only lists studies that have Institutional Review Board (IRB) approval. To best match to a trial you must complete a brief questionnaire composed of 11 questions about yourself (or the HD impacted individual).
Results Since launch, in 2015, HD Trialfinder has registered nearly 1900 users. 70% of users are HD patients, 28.5% family/friends and 1.5% are physicians. On average, the call centre handles ~90 interactions (calls/emails) each month. HD Trialfinder provides you with a patient-friendly summary of the different clinical studies, as well as the contact information for the nearest HD study. Data from Emerging Med show that patients that speak with someone about clinical trials are 4 times more likely to enrol than those who do not. Outreach by the clinical trial navigators will allow us to partially quantify the impact HD Trialfinder has on HD trial recruitment.
Conclusions All HD organisations and families share a common goal of finding effective therapies for HD as quickly as possible. In the future, HDSA would the HD Trialfinder and call centre expanded to include multiple languages and HD trials from other countries to serve as a global HD clinical trial resource. In partnership with other HD organisations, it is our hope that HD Trialfinder will work to expedite the recruitment of current and future HD trials and help make effective therapies for HD a reality.
- clinical trials
- patient engagement
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