Call to Action – Your Voice Matters!

Help us understand what truly matters to you when enrolling in clinical trials

Dear KCNQ2 community,
We warmly invite you to take part in a short survey aimed at improving enrolment strategies and trial design for rare disease clinical trials. This survey was developed as part of the EU Horizon Europe project RealiseD.

Take the survey:
Rare Disease Clinical Trial Enrolment Questionnaire – RealiseD

⏱ Estimated time: 15–20 minutes
📅 Deadline: 28 January 2026

Who can participate?

• This is a multi-stakeholder survey, and we welcome input from:
• Patients and caregivers
• Clinicians
• Researchers
• Pharma representatives
• Regulators
• Patient advocacy organisations

Every perspective is valuable.

What will this survey contribute to?

The RealiseD team is developing a Bayesian Network model to simulate the likelihood that a clinical trial site can successfully enrol patients in rare disease trials, based on real-world factors.

Why does your input matter?

Your experience will help to:

• dentify common barriers to trial enrolment,
• quantify which barriers have the greatest impact,
• understand differences across sites and disease areas,
• and ultimately support the development of a decision-support tool to improve trial feasibility and design across Europe.

Confidentiality:
All responses will remain confidential and will only be analysed and shared in aggregated form.

Questions about the survey or the RealiseD project?
Please contact: mariaanna.kefalas@erdera.org

Thank you very much for your time and valuable contribution!

About the RealiseD Project

RealiseD is a Horizon Europe project bringing together academic centres, patient organisations, methodology experts, industry partners, and regulators.
Its goal is to improve clinical trials for rare and ultra-rare diseases, from participant enrolment to innovative methodologies and regulatory acceptance.

🔗 Learn more:
https://realised-ihi.eu/