Fondazione per la Ricerca Farmacologica Gianni Benzi, as a partner of the European project ERDERA (European Rare Disease Research Alliance), invites researchers, clinicians, data stewards, research support professionals and representatives of patient organisations to participate in the survey designed to identify the main consultancy needs in rare disease research.

The survey, recently reopened to broaden participation, aims to pinpoint the areas where projects most often encounter challenges and where targeted expert support can help accelerate progress toward robust and timely scientific results. The consultation covers topics such as ethics and regulatory aspects, data quality and governance, patient and public involvement, intellectual property, innovation management and operational activities related to study start-up.

“Expanding the number and diversity of contributions allows us to develop services that truly meet the needs of those working daily in rare disease research,” says our researcher Annalisa Landi, contact point for the initiative within ERDERA.

The survey results will guide the development of ERDERA consultancy services and help ensure their long-term sustainability. All responses will be handled confidentially and results will be shared publicly only in aggregated form.

To take part in the survey: Exploring RD Researchers’ Needs for Consultancy Services