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.
Creating Patient-Centric Trials and Technology for a Better Patient Experience
To commemorate this year’s Patient Experience Week—which celebrates healthcare staff impacting patient experience and provides a focused time for…
What to ask for when you’re interested in a clinical trial: A guide for rare disease patients and caregivers
Considering a clinical trial? This handy guide will help you ask about the support you’ll receive to make your participation easier and make informed…
Shortening the Path to Rare Disease Diagnosis with a Patient-Centric Approach
Many rare disease patients struggle for years before they know what their symptoms indicate, and even longer to find a meaningful treatment. Learn…