ERDERA, the European Rare Disease Research Alliance, has launched the Exploring RD Researchers’ Needs for Consultancy Services survey to map in which areas Rare Disease (RD) research community across Europe and beyond need external consultancy support most. Its findings could help shape a new dedicated ERDERA consultancy service offering specialised advice to projects funded through the partnership and the broader RD research community.
The survey, which is now open and accessible here, asks research community to pinpoint the gaps they encounter when seeking external expert consultancy support. Whether the support was requested in ethics and regulatory science areas, data readiness, patient involvement areas, or other critical areas where projects often stall.
ERDERA aims to understand if and where targeted consultancy services could make the biggest difference.
A global survey
The right advice at the right time can make a significant difference. An ERDERA-endorsed ethics and regulatory consultancy service, for example, could help a research team to harmonise submissions across different countries, to align clinical study documents with the applicable ethics provisions and regulatory requirements, and shorten a studies start-up phase by several months. This, in turn, can accelerate the path towards meaningful clinical evidence.
“When researchers identify the precise point where progress slows—whether in drafting an informed-consent form or navigating orphan-medicine incentives—targeted consultancy can turn a bottleneck into a stepping-stone,” explains Annalisa Landi from the Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus (Benzi Foundation), one of the ERDERA leaders behind this initiative. “I trust this survey will reveal where that shift is most urgently needed”, she adds.
What happens next
The Exploring RD Researchers’ Needs for Consultancy Services survey will guide decisions about which service areas is to be prioritised, help define the necessary expertise profiles of external advisers, and inform how the ERDERA Consultancy Service can remain sustainable beyond the partnership’s funding period.
All responses will remain confidential to the evaluation team, with aggregated findings shared publicly.
• Survey link: here.
• Closing date: 30 September 2025 (23:59 CEST)
• Questions: annalisa.landi@erdera.org
