Patient enrollment can be difficult for clinical trials targeting rare genetic diseases. These trials typically target very small patient populations, leading to challenges in enrolling patients. Also, enrollment is often restricted by logistical and social barriers such as language, participants’ ability to take time off from work, and participants’ ability to travel to research sites.

Given the barriers to identifying patients for rare disease studies, achieving enrollment success also requires more inclusive study design and technology-driven solutions. Biotech and pharmaceutical companies increasingly recognize the importance of connecting to patient advocacy groups to identify and enroll a diverse population of patients in clinical trials.

In this whitepaper, we address how to engage patient advocacy groups as critical stakeholders in clinical trials, leading to more inclusive patient populations.

InformedDNA is the largest full-service genetic advisory company in the U.S., with a suite of offerings for sponsors and CROs optimized to support clinical trials, natural history studies, and clinical research programs. Our services are designed to reduce time to enrollment, increase screening efficiencies, improve patient retention, mitigate sponsor risk, and reduce clinical trial costs.

Have questions or ready to talk? Just send an email to; or, give us a call at 844-846-3763.

Download your copy of the whitepaper, “Patient Diversity and Inclusion in Rare Disease Clinical Research.”


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