French Rare Eye Disease Database FReSH-43701-en Camille Marin French Rare Eye Disease Database FREDD FReSH-43701-en Hélène DOLLFUS INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) France Recherche en Santé Humaine (FReSH) MINISTERE DE L’ENSEIGNEMENT SUPERIEUR, DE LA RECHERCHE ET DE L’ESPACE MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES null Hélène ;DOLLFUS CNIL retinitis pigmentosa rare eye disease health data warehouse EDS SENSGENE INSERM inherited retinal dystrophies Medical genetics Ophthalmology Inherited retinal dystrophies Biological determinants Biological determinants: Genetic predisposition FREDD’s goal is to put this data to work for science. By bringing together a critical mass of information (clinical, genetic, and imaging data), we enable researchers to better understand the progression of these diseases, discover new biomarkers, develop the innovative treatments of the future, and more. FREDD (short for French Rare Eye Diseases Database) is much more than just a database. It is a nationwide Health Data Warehouse (HDW), designed to centralize and securely store medical information on patients with rare eye diseases and their families. Integrated at the heart of the SENSGENE healthcare network, FREDD collects valuable data on complex retinal conditions, such as retinitis pigmentosa, Stargardt disease, Usher syndrome, and many others. France Individus Patients population Female Male Other Prenatal Infant, Newborn (birth to 28 days) Infant (28 days to 2 years) Child, Preschool (2 to 5 years) Child (6 to 12 years) Adolescent (13 to 18 years) Young Adult (19 to 24 years) Adult (25 to 44 years) Middle Aged (45 to 64 years) Aged (65 to 79 years) Aged, 80 and over (80 years and more) Suffering from a rare eye disease Clinical data Paraclinical data (non-biological) Paraclinical data (non-biological) : Imaging Genetic / genomic data SDM-MR ORPHA HPO HGVS HGNC ATC Not appropriate Not appropriate Other Daily - Weekly Other Other [1000-10000[ individuals Other Observational Study Observational Study Cohort study 2600 Ongoing study Restricted access https://fredd-eds.fr/demande-dacces-aux-donnees/ Equipe; FREDD yes no Request to the data warehouse management team