Rare Diseases & Orphan Drugs

Rare Disease Clinical Trials: Recruitment and Retention Strategies

Recruiting and retaining participants in clinical trials for rare diseases can be challenging due to the limited number of eligible patients and the burden of participation. Patient advocacy groups play a critical role in helping researchers identify and recruit eligible patients. Social media and online platforms can also be effective tools for reaching patients and raising awareness of clinical trials. Incentives, such as travel reimbursements and access to free treatment, can also help retain participants in trials. Providing clear and regular communication with participants and their families about the trial's progress and results is essential to maintaining engagement and trust. Collaboration between researchers, healthcare providers, patient advocacy groups, and patients is necessary to overcome recruitment and retention challenges and advance rare disease research.