GENRARE

The Registry of Genetic and Low-Prevalence Diseases (GENRARE) is the Rare Diseases registry platform promoted by CIBER and coordinated by the Rare Diseases Thematic Area (CIBERER).

GENRARE operates as an umbrella for different clinical sub-registries specific to various diseases of this type or groups of them. It is an observational, multicentre project that brings together efforts from multiple hospitals and research centres at both national and international levels. Standardised clinical data from participating patients are collected with the aim of generating high-quality data to support research in this area, characterise these diseases, understand their progression, and improve their clinical management.

The platform operates under a common framework, and its structure facilitates the long-term maintenance of sub-registries, avoids duplication, and ensures data quality (in terms of structure, design, quality control, and monitoring).

For more information: https://genrare.ciberisciii.es/