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February 24, 2025

Earning Their Trust: Challenges and Best Practices in Rare Disease Patient Recruitment

Making rare disease patients aware of clinical trials, involving them in trial design, and building trust are a few of the ways sponsors can boost recruitment.

If they continue to share how they really do care about the greater health of the community, then it provides a level of street cred and brand for them as a sponsor.

– Jenifer Waldrop, Executive Director, Rare Disease Diversity Coalition (RDDC)

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FAQ

Why is rare disease patient recruitment uniquely challenging?

Rare disease patient recruitment is difficult because each condition affects a very small, often geographically dispersed population. Long diagnostic journeys, frequent misdiagnoses, low awareness of available trials, and the daily burden of living with a rare disease all limit the pool of eligible and reachable participants — even when patient interest is high.

How do delayed diagnoses affect clinical trial enrollment?

Delayed and incorrect diagnoses significantly reduce recruitment opportunities. Many rare disease patients wait years for an accurate diagnosis, and some innovative therapies have narrow treatment windows. Without timely diagnosis, patients may be excluded from trials altogether, even when they could otherwise benefit.

How can technology and AI support rare disease clinical trials without undermining trust?

AI has the potential to shorten diagnostic timelines, improve trial matching, and reduce administrative burden, enabling more patient centric trials. However, success depends on transparency, bias mitigation, secure data handling, and integrated digital infrastructure. Clear communication about how AI is used is critical to maintaining patient trust.

Earning Their Trust: Challenges and Best Practices in Rare Disease Patient Recruitment

FAQ

Why is rare disease patient recruitment uniquely challenging?

How do delayed diagnoses affect clinical trial enrollment?

How can technology and AI support rare disease clinical trials without undermining trust?

Citeline PatientMatch

Trial Portfolio Websites

Community Portal

Earning Their Trust: Challenges and Best Practices in Rare Disease Patient Recruitment

FAQ

Why is rare disease patient recruitment uniquely challenging?

How do delayed diagnoses affect clinical trial enrollment?

How can technology and AI support rare disease clinical trials without undermining trust?

Explore related solutions

Citeline PatientMatch

Trial Portfolio Websites

Community Portal