Call for input from the RealiseD project: What are the factors that impact participant enrolment in clinical trials? Help shape the rare and ultra rare disease clinical trial landscape by giving your feedback in this survey.

Recruiting the right patients for clinical trial is a big challenge. In rare and ultra rare diseases, it can become even more challenging. What are the reasons behind it and how can we overcome them?

The Rare Disease Clinical Trial Enrolment Questionnaire aims to shed light on these questions by identifying and understanding the factors that impact participant enrolment in rare and ultra rare disease clinical trials.

This is a multi-stakeholder survey! It means we are looking for perspectives from clinicians, academics, industry representatives, regulators, academic developers, and patient representatives on this topic.

Open until 28^th January 2026

The survey is organised into 3 main sections and groups enrolment-impacting factors into:

1. Trial Site and Structural Factors: Linked to logistics, staff and data tools and sharing aspects.
2. Trial Design and Operational Factors: Tap into aspects around the trial design, location and duration as well as into participant characteristics, experiences and information needs.
3. Patient-Level and Disease Factors: Delves into aspects such as patient age, treatment options or even disease severity and impact.

 

The questionnaire is anonymous, and we will only use and share collective data. Your individual responses will not be shared with any third parties.