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.
Download the Patient-Centric Trial Development Toolkit
Download 4 practical tools for patient-centric trial development including: Patient Involvement Value Dossier, Patient-Centric Protocol Risk…
Patient-Centric Trial Development Toolkit
Learn more about our practical tools for sponsors, participants and champions of patient-centric trial development and how you can start using them…
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…