The éPiRaReS Consortium is composed of a group of experts in epilepsy from Robert-Debré University Hospital (AP-HP), Adolphe de Rothschild Foundation Hospital and Pitié-Salpêtrière University Hospital (AP-HP). éPiRaReS is member of the European Reference Network for rare and complex epilepsies EpiCARE since January 1st, 2022.

Robert-Debré University Hospital, AP-HP, is a reference institution dedicated to the care of children, adolescents and mothers-to-be. Fulfilling its three missions of local and referral care, teaching, and research, it is one of the most important mother-child hospitals in Europe. The hospital’s pediatric neurology department treats children suffering from nervous system pathologies. Care begins in the prenatal period and continues until the child is 18 years old. Up to 14 children can be admitted into the department as inpatients, but every effort is made to provide outpatient care.

The five main areas of expertise of the pediatric neurology department are:

• Epilepsy: focal epilepsy, infantile spasms syndrome, tuberous sclerosis complex…
• Emergency neurology: emergencies, resuscitation, neonatal resuscitation
• Fetal neurology
• Leukodystrophy, neurodegenerative diseases and neuromotor disorders
• Neurodevelopmental disorders and intellectual disability

The strength of the neurology department is to be able to offer patients a global and multidisciplinary care thanks to the collaboration with other departments of the hospital (child psychiatry, neonatology, imaging…) and other AP-HP hospitals.

The pediatric neurology department also hosts the Reference Center for Rare Epilepsies of Robert-Debré Hospital, which is one of the 8 French reference constitutive centers dedicated to rare epilepsy.

For more than a century, the Adolphe de Rothschild Foundation Hospital has been developing expertise in the treatment of head and neck pathologies. Its neurology activities have been progressively enhanced over the last few decades, notably with neurosurgery and interventional neuroradiology.

The pediatric neurosurgery department of the Adolphe de Rothschild Foundation Hospital houses all the « Head and Neck » pediatric specialties in its conventional hospitalization unit: neurosurgery, ophthalmology, ENT, interventional neuroradiology and endocrinology. The patient journeys include outpatient evaluations and follow-ups in consultation or multidisciplinary day hospitalization. Functional neurosurgery for epilepsy and dystonia is one of the hospital’s areas of expertise. The department is the first French center for neurophysiological and neuropsychological evaluation and neurosurgical management of drug-resistant epilepsy in infants, children and adolescents, as well as one of only two national centers for deep brain stimulation of dystonia in children, and one of the first in the world for the management of hypothalamic hamartomas. It uses techniques such as electroencephalography, evoked potentials or electroneuromyography.

The Pitié-Salpêtrière University Hospital is a public health institution belonging to the Assistance Publique – Hôpitaux de Paris (AP-HP). It is the largest hospital group in France, providing local and specialized services, teaching, and research. Located in the 13th arrondissement of Paris, it gathers 90 buildings spread over 33 hectares, with 77 departments grouped into 10 poles representing all existing medical activities. It has a very wide range of medical specialties supported by the existence of 26 rare disease reference centers and 2 university hospital institutes, the Brain and Marrow Institute and the Institute of Cardiometabolism And Nutrition.

The neurology department welcomes patients for diagnostic and/or therapeutic assessments. It includes consultation areas (with emergency consultations), day hospitalization, weekday hospitalization and traditional hospitalization. In addition to its expertise in the various fields of neurology, one of the department’s specificities is its intensive care unit dedicated to neurological patients. The department is also linked to several national reference or competence centers. The link between care and research activities is close, thanks to the neurological research structure, the Clinical Investigation Center, and to interactions with the Brain and Marrow Institute and the University Hospital Institute of Neuroscience.

The epilepsy unit takes care of all adult epileptic patients and has a traditional hospitalization area of 14 beds, outpatient consultations and day hospitalizations. This unit deals with the initial management of epilepsy (‘first seizure clinic’), the diagnostic re-evaluation of difficult-to-treat epilepsy (in search of a more precise differential or syndromic diagnosis), and the management of drug-resistant epilepsy. The epilepsy unit is labelled as a rare epilepsy reference center and carries out specific etiological assessments (in search of genetic, metabolic and autoimmune causes). A global management of epilepsy is also proposed (therapeutic education, psychiatric and social care).

The neurosurgery department deals with cranial pathologies (epilepsy surgery) and has a diagnostic and therapeutic stereotaxis and radiosurgery activity.