The Rare Diseases Forum held its first series discussion for the Conducting Clinical Trials Amid COVID-19 working group on May 15, 2020. This working group will focus on the challenges in conducting clinical trials for rare diseases amid the COVID-19 pandemic and, as possible, document best practices and develop recommendations. This group will also explore how to address unplanned changes in clinical trials in rare diseases affected by COVID-19 and other potential future health emergencies and pandemics, while maintaining the scientific integrity and interpretability of study results.
Registrants for this discussion represented patients, advocacy organizations, academia, federal agencies, industry, professional societies, and other relevant entities. This discussion focused on the participants perspectives, needs, experiences, and potential solutions for the immediate situation, while laying the groundwork for transforming the rare diseases clinical research paradigm to be more patient friendly and efficient for the future.
