EU calls
06 February 2026
ERDERA Transnational 2026 Call: Pre-Proposal Deadline 12 February for Rare Disease Research
The RealiseD project has launched a multi-stakeholder survey to identify barriers and opportunities in rare disease clinical trial enrolment. Healthcare professionals, patient advocates, researchers, and industry representatives are invited to participate before the 15 February 2026 deadline.
- Survey deadline: 15 February 2026
- Duration: 15-20 minutes to complete
- Target audience: Healthcare professionals, patient advocates, researchers, industry, regulators
- Access: Free, anonymous, online survey
- Goal: Improve clinical trial accessibility for rare and ultra-rare diseases
Clinical trials are essential for advancing new therapies for rare and ultra-rare diseases. However, recruiting participants for these conditions remains a significant challenge due to small patient populations, geographic barriers, complex eligibility criteria, and limited awareness of available trials.
The RealiseD project, a European research initiative funded by the Innovative Health Initiative (IHI), aims to strengthen the design and conduct of interventional clinical trials for rare and ultra-rare diseases. This new survey seeks to understand the structural, operational, and patient-level factors that influence trial enrolment and to develop solutions that make trials more inclusive, patient-centric, and effective.
Share your perspective
The RealiseD survey invites multiple stakeholders from the rare disease community to share their insights and experiences with clinical trial enrolment. Participants include:
- Healthcare professionals involved in rare disease care
- Clinical researchers and trial coordinators
- Patient advocates and patient organisation representatives
- Pharmaceutical and biotechnology industry representatives
- Regulatory authorities and ethics committee members
- Trial sponsors and funders
All responses are strictly anonymous, and only aggregated data will be shared. Individual answers will never be disclosed.
🢂 Complete the RealiseD clinical trial enrolment survey
What the survey covers
The online survey is divided into three sections designed to capture comprehensive insights into factors affecting rare disease clinical trial enrolment:
1. Trial Site and Structural Factors
This section explores logistics, staffing, infrastructure, and data-sharing tools that impact accessibility to clinical trials. Questions examine how trial site capacity, geographic location, and collaboration networks influence patient recruitment.
2. Trial Design and Operational Factors
This section focuses on trial location, duration, inclusion and exclusion criteria, and participant experience. Respondents are asked to consider how trial design choices—such as frequency of visits, outcome measures, and use of remote monitoring—affect enrolment and retention.
3. Patient-Level and Disease Factors
This section examines how patient age, available treatment options, disease severity, and disease progression influence willingness and ability to participate in clinical trials. Understanding these factors is critical to designing trials that meet patient needs and preferences.
How your input will shape rare disease research
Insights from this survey will inform the development of a transversal, cross-disease model—a framework that identifies common barriers and facilitators across different rare conditions and trial types. This model will help define generalisable best practices that can be applied to multiple rare diseases, improving the feasibility, efficiency, and patient-centredness of interventional clinical trials across Europe.
By participating, you contribute to evidence-based strategies that can accelerate access to new therapies for people living with rare and ultra-rare diseases worldwide.