Ophtara centers of expertise in France: Fostering collaborative research and patient care for rare eye diseases

Purpose The French National Reference Center on Rare Diseases in Ophthalmology OPHTARA was labeled in 2006. This expertise center (re-labeling in 2017) includes Necker coordinating site, 3 component sites (Paris University Hospitals) and 16 national competence centers. Necker is unique center for rare eye diseases and ocular surgery for children. OPHTARA ensures patient care (children and adults) and covers all rare eye diseases, mostly genetically determined. OPHTARA and ocular genetics laboratory provides optimal genetic diagnosis. Methods OPHTARA recent structure gathers together 20 centers of expertise (CEs) localized all over France and 2 overseas territories. The center is attached to the National HealthCare Network SENSGENE and it is unique consortium part of European Reference Network (ERN) EYE, accredited in 2016. Rare eye disorders were divided in 4 goupes: diseases of anterior/posterior segment, of lacrimal/eyelid/orbit/, panocular and syndromic. Results OPHTARA is incrementing a database for rare diseases CEMARA including actually 7600 registered patients (2008-2017). The refferal Center established an optimal overall patient management strategy. OPHTARA develops actions concerning patient diagnosis, monitoring and care, research, clinical trials, education, professional training and information for patients and their families. The reference center defines healthcare protocols and guidelines, being the contact for many patient's associations. Conclusions OPHTARA ensures a role of expertise, multidisciplinary care and follow-up of patients thanks to the specific recognized skills of HCPs experts in rare ocular diseases. The networking could lead to the gathering of the scarce expertise in France to ensure high quality care for rare eye disease patients. European dimension of OPHTARA health care is proved by ERN EYE integration.