{"id":422,"date":"2026-01-20T16:19:30","date_gmt":"2026-01-20T15:19:30","guid":{"rendered":"https:\/\/genrare.ciberisciii.es\/que-es-genrare\/"},"modified":"2026-06-10T18:06:45","modified_gmt":"2026-06-10T16:06:45","slug":"what-is-genrare","status":"publish","type":"page","link":"https:\/\/genrare.ciberisciii.es\/en\/what-is-genrare\/","title":{"rendered":"What is Genrare"},"content":{"rendered":"\n
\"\"<\/span>
\n

What is GENRARE<\/strong><\/h1>\n\n\n\n

GENRARE is the clinical registry platform for rare and genetic diseases of the Center for Biomedical Network Research (CIBER), coordinated by CIBERER. Its objective is to collect detailed and standardized clinical data on rare diseases to promote research and improve clinical management.<\/p>\n<\/div><\/div>\n\n\n\n

\n
\n
\n
\n
\"\"<\/figure>\n<\/div>\n\n\n

Why is GENRARE necessary?<\/h2>\n\n\n\n

Rare diseases affect a small number of people, making it difficult to generate robust clinical knowledge. Without a coordinated and standardized effort, data collected in isolation cannot advance the diagnosis, treatment, or comprehensive management of these conditions.<\/p>\n\n\n\n

GENRARE<\/strong> emerged as a response to this need, facilitating the collection of quality information and promoting collaboration between multiple centers.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n

\n
\n

What is a clinical registry?<\/h2>\n\n\n\n

A clinical registry is a collection of patient data specifically used for disease research or to enable present or future clinical trials. GENRARE includes data from patients diagnosed with rare diseases.<\/p>\n<\/div>\n\n\n\n

\n
\"\"<\/figure>\n<\/div>\n<\/div>\n\n\n\n
\n
\n
\n
\n
\"\"<\/figure>\n<\/div>\n\n\n\n
\n

OBJECTIVES<\/h2>\n\n\n\n

GENRARE’s objectives focus on advancing knowledge and improving the management of rare diseases. Through the collection of standardized clinical data, the platform aims to facilitate research, optimize clinical practice, and promote collaboration between healthcare professionals and patients.<\/p>\n\n\n\n