As we look ahead at continuing research in the post-pandemic era, a hybrid model leveraging patient-friendly technology and remote study visits will surely emerge.
February 15, 2021
Clinical trials for rare diseases have always presented special challenges. From investigator training to data collection, conducting clinical research for interventions targeting orphan disorders is mired with condition-specific challenges that slow the development process and place an enormous burden on patients wishing to participate in a potentially life-saving clinical trial. To reduce that participation burden — on patients, their families and on investigators — rare disease researchers would be well-served to consider decentralized clinical trial (DCT) tools and methods to bring clinical trials directly into patients’ homes.
Even prior to the COVID-19 pandemic, the industry was moving away from the traditional clinical trial model in which patients are screened and enrolled at a limited number of sites toward a more patient-centered model that reduces (if not eliminates) travel time and other logistical barriers for participating in a clinical trial. And as we look ahead at continuing research in the post-pandemic era, a hybrid model leveraging patient-friendly technology and remote study visits will surely emerge.
Particularly useful for rare disease studies, a patient-focused hybrid development model that includes DCT components can not only help to identify potential patients and investigators more quickly, but can also help collect real-world data from the population of patients for whom the intervention is targeted — data that are increasingly vital (and requisite) for regulators and payers.
Join Jonathan Cotliar, Chief Medical Officer, Science 37, John Hogan, Senior Director – Clinical Operations Development, Voyager Therapeutics, Julie Walters, Founder and Executive Director, Raremark and Nuala Summerfield, Founder and Chair of Trustees, Schinzel-Giedion Syndrome Foundation in a live webinar on Tuesday, March 2, 2021 at 10am EST (3pm GMT/UK) to hear about the unique challenges in recruiting both patients and investigators for rare disease trials.
For more information, or to register for this event, visit Decentralized Trials for Rare Diseases: Bringing Research to the Patient.
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