Child-to-adult transition: a survey of current practices within the European Reference Network for Rare Neurological Diseases (ERN-RND).
Lorenzo NanettiMary KearneySylvia BoeschLucie StovickovaJuan Darío Ortigoza-EscobarAlfons MacayaDavid Gomez-AndresEmmanuel RozeMaria-Judit MolnarNicole I WolfAlejandra DarlingGessica VascoEnrico BertiniElisabetta IndelicatoDavid NeubauerTobias B HaackJudit C SagiFederica R DantiDeborah SivalGinevra ZanniAnneli KolkOdile Boespflug-TanguyLudger ScholsBart van de WarrenburgMarie VidailhetMichèl A WillemsenAnnemieke I BuizerEnrico OrzesSophie RippCarola ReinhardIsabella MoroniCaterina Mariottinull nullPublished in: Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology (2023)
This survey demonstrated significant variations in clinical practice between different centers within the ERN-RND network. It provided valuable data on existing transition programs and highlighted key challenges in managing transitions for patients with rare neurological disorders.