Development and Implementation of the AIDA International Registry for Patients with Non-Infectious Scleritis

Article Oncology

The European Paediatric Rare Tumours Network - European Registry (PARTNER) project for very rare tumors in children

Daniel Orbach et al.

Summary: The PARTNER project aims to create a European Registry specifically for children and adolescents with very rare tumors, connecting existing national registries and providing data for new clinical practice guidelines. This project will increase collaboration in pediatric oncology among member states and facilitate the inclusion of low health expenditure average rate (LHEAR) countries in the process. Moreover, it creates a comprehensive platform for rare diseases that may serve as a model for addressing rare tumors.

PEDIATRIC BLOOD & CANCER (2021)

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Article Oncology

Facing the challenges of very rare tumors of pediatric age: The European Cooperative Study Group for Pediatric Rare Tumors (EXPeRT) background, goals, and achievements

Andrea Ferrari et al.

Summary: In recent years, the creation of the European Cooperative Study Group for Pediatric Rare Tumors (EXPeRT) project has brought together various national schemes to promote research in the field of rare pediatric tumors. Through networking, seeking new partnerships, joining forces, and pooling resources, EXPeRT has expanded the reach of research efforts and ultimately improved the quality of patient care.

PEDIATRIC BLOOD & CANCER (2021)

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Review Endocrinology & Metabolism

Supporting international networks through platforms for standardised data collection-the European Registries for Rare Endocrine Conditions (EuRRECa) model

S. R. Ali et al.

Summary: The EuRRECa project aims to support the needs of the endocrine community through cross-border collaboration, collecting data on rare endocrine conditions through a core registry that includes patient-reported clinical outcome markers and guides participants to disease-specific registries.

ENDOCRINE (2021)

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Review Genetics & Heredity