This tool was developed to help you, the sponsor, gather study-specific feedback directly from patient communities on aspects of your rare disease trial that may be challenging for participants.

This may help guide trial design to mitigate risks of recruitment failures, retention failures, protocol amendments and other inefficiencies and improve participation experience.

Feedback obtained using this tool should be considered as a starting point only for further collaboration with patient communities to de-risk and support the success of a rare disease clinical trial.

We strongly recommend working with Patient Advocacy Organizations (PAOs) that support your target trial population to disseminate the survey you create to patients and caregivers.

Updated 27APR2021

Questions about how to use this tool? Contact the Center for Rare Disease.

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Rapid Participation Burden Survey

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