Erica Cohen, chief experience officer, Greenphire, and Thomas Smith, life sciences public engagement specialist, explore the current issues that hinder rare disease clinical trials, and what solutions should be invested and incorporated to maximise flexibility for the trial patients.
Key insights:
- Rare disease trials typically require more travel than non-rare diseases due to the limited accessibility of trial sites - emphasising the importance of adopting hybrid decentralised trials.
- Trial-related expenses - such as distance to travel and time off work - discourages participants from trials which labours one of the biggest threats to a clinical trial; participant retention.
- Sponsors and CROs need to provide sites with access to global services but also maintain visibility and cost predictability through their patient-centric suppliers and practices.
According to Rare Diseases Europe (EURORDIS) and its global partners, there are over 300 million people around the world living with rare diseases. Due to the lack of medical knowledge about these diseases, there is an urgent need for continuous research to be done. However, rare disease patients face many obstacles in being able to participate in studies, which in turn, limits the number of clinical trials taking place and the ability to develop new treatments.