Challenges in Recruiting Rare Disease Patients for Trials

This document is a report detailing the challenges faced by sponsors in recruiting and retaining patients for clinical trials focused on rare neurological disorders. It presents findings from a study conducted by Parexel, which highlights the significant role of mental health support in the care of patients with rare diseases. The report emphasizes that mental health is often overlooked in treatment plans, with healthcare professionals expecting patients to advocate for their mental health needs. It also discusses the difficulties newly diagnosed patients encounter in accessing credible information and the emotional burden on caregivers. The report suggests that sponsors should provide up-to-date educational resources and consider the unique needs of caregivers in trial protocols. Additionally, it addresses the frustrations patients experience with strict eligibility criteria for clinical trials and the need for improved communication and trust between patients and healthcare providers. The findings aim to guide sponsors in enhancing patient participation in clinical trials.