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EndoCompass project: rare diseases in endocrinology
Alberto M Pereira1,2, Olaf Hiort2,3
1Department of Endocrinology and Metabolism, Amsterdam University Medical Center, Meibergdreef 9, 1105AZ Amsterdam, the Netherlands.
European Journal of Endocrinology
|October 17, 2025
Summary
Endocrine research funding in Europe is insufficient despite hormone health
Area of Science:
- Endocrinology and hormone health research.
- Rare disease research infrastructure development.
Background:
- Endocrine science is underrepresented in EU research programs, impacting hormone health.
- A gap exists between the societal impact of endocrine disorders and research prioritization.
- National funding for endocrinology research is limited.
Purpose of the Study:
- To identify and promote strategic research priorities in endocrine science.
- To address critical hormone-related health challenges through the EndoCompass project.
- To develop a roadmap for rare disease research infrastructure.
Main Methods:
- Analysis of the EU CORDIS database (Horizon 2020).
- Expert evaluation of the European rare disease research landscape.
- Assessment of European Reference Networks and research infrastructures.
Main Results:
- Priorities include harmonized data capture, patient-centered outcomes, and innovative trial methods for rare diseases.
- Genomic innovation for diagnostics and sustainable research networks are key.
- Bridging pediatric and adult care gaps and fostering public-private partnerships are emphasized.
Conclusions:
- An evidence-based roadmap for rare disease research infrastructure has been developed.
- Coordinated European approaches are needed for rare disease research.
- Strategic investment in sustainable rare disease research networks is supported.
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