The European Rare Disease Research Alliance (ERDERA) has re-opened its survey to better understand where the rare disease research community most needs external consultancy support with the goal to turn practical insights from researchers and stakeholders into targeted consultancy services that help projects overcome common bottlenecks and generate robust, timely evidence.
Launched in September 2024 and co-funded by the European Union and participating countries and organisations, ERDERA is assessing demand for expert support in areas such as:
• Ethics and regulatory alignment
• Data readiness and governance
• Patient and public involvement (PPIE)
• Intellectual property and innovation management
• Study start-up operations
By extending the response window, ERDERA aims to capture more diverse perspectives from researchers, clinicians, project managers, data stewards, and patient partners across Europe and beyond.
The Exploring RD Researchers’ Needs for Consultancy Services survey will help identify which ERDERA service areas should be prioritised, define the expertise profiles needed from external advisers and inform how ERDERA Expertise Services can remain sustainable beyond the partnership’s funding period.
