News
New survey launched to improve rare diseases clinical trial enrolment
2026-01-14
A new multi-stakeholder survey, launched by the RealiseD project, invites the rare disease community to share insights and help improve clinical trial enrolment
Clinical trials are essential to advancing new therapies; however, recruiting participants for rare and ultra‑rare conditions remains a significant challenge. The RealiseD project launched a survey that seeks to identify and understand the factors that influence enrolment in rare disease clinical trials.
This consultation invites health care professionals, academia, industry representatives, regulators, trial sponsors and patient advocates to share their perspective on barriers and opportunities and contribute to shaping a more inclusive and efficient future for rare disease research.
The online survey is divided into three sections:
- The first explores trial site and structural factors, looking at logistics, staffing, and data-sharing tools that impact accessibility.
- The second focuses on trial design and operational factors, including aspects such as trial location, duration, and participant experience.
- The third section delves into patient-level and disease factors, examining how age, treatment options, and disease severity influence participation.
This consultation process will close on 28 January 2026. Read more HERE!