As part of the Horizon Europe project RealiseD, a short survey is being conducted to better understand how clinical sites identify, approach, and enrol patients with rare diseases.
Investigators, study nurses, trial coordinators, patients and their representatives and all professionals involved in rare-disease studies are invited to take part until 28 January 2026. Estimated time for completion: 15–20 minutes.
Survey link: https://forms.office.com/e/nhaqB5gvN6
Rare-disease trials continue to face challenges in patient identification and site activation. To address this, the RealiseD team is developing a Bayesian Network model to simulate how real-world factors influence enrolment success — from site expertise and operational constraints to patient burden and disease characteristics.
Your input will help to:
• uncover common bottlenecks
• identify what truly drives (or limits) enrolment
• calibrate the model using real-world insights rather than assumptions
• support better feasibility planning for future trials
All responses are confidential and analysed in aggregate only.