Rare disease clinical trials face unique challenges, such as low prevalence of disease and few qualified investigators, resulting in greater risks to clinical development programs for sponsors. A rare disease clinical trial may test a biotechnology company’s only asset or represent a significant part of their portfolio. On the patient side, clinical trials may represent an individual’s first or only opportunity to access a potential treatment.
Prior to Scout Clinical and ICON plc’s (formerly PRA Health Sciences) focus group series, no systematic research had been conducted to understand the participation support needs of individuals affected by rare diseases or the effect of unmet participation support on trial participation and completion.
Learn how the insights from these focus groups address the significant gap between the clinical trials experiences and perceptions of patients and the participation support services provided to them.