BACKGROUND: Transition from child-centered to adult-centered healthcare is a gradual process that addresses the medical, psychological, and educational needs of young people in the management of their autonomy in making decisions about their health and their future clinical assistance. This transfer is challenging across all chronic diseases but can be particularly arduous in rare neurological conditions. AIM: To describe the current practice on the transition process for young patients in centers participating in the European Reference Network for Rare Neurological Diseases (ERN-RND). METHODS: Members of the ERN-RND working group developed a questionnaire considering child-to-adult transition issues and procedures in current clinical practice. The questionnaire included 20 questions and was sent to members of the health care providers (HCPs) participating in the network. RESULTS: Twenty ERN-RND members (75% adult neurologists; 25% pediatricians; 5% nurses or study coordinators) responded to the survey, representing 10 European countries. Transition usually occurs between 16 and 18 years of age, but 55% of pediatric HCPs continue to care for their patients until they reach 40 years of age or older. In 5/20 ERN-RND centers, a standardized procedure managing transition is currently adopted, whereas in the remaining centers, the transition from youth to adult service is usually assisted by pediatricians as part of their clinical practice. CONCLUSIONS: 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.

Amsterdam Leukodystrophy Center Department of Child Neurology Emma's Children's Hospital Vrije Universiteit Amsterdam Amsterdam Neuroscience Cellular and Molecular Mechanisms Amsterdam The Netherlands

APHP Université Paris Cité INSERM UMR1141 Hôpital Robert Debré Service de Neuropédiatrie Centre de Reference LEUKOFRANCE Paris France

Center for Rare Movement Disorders Department of Neurology Innsbruck Austria

Centre for Rare Diseases and Institute of Medical Genetics and Applied Genomics University Hospital Tübingen Tübingen Germany

Centre of Hereditary Ataxias Department of Pediatric Neurology 2nd Faculty of Medicine and Motol University Hospital Prague Czech Republic

Department of Neurology and Hertie Institute for Clinical Brain Research University of Tübingen and German Center for Neurodegenerative Diseases Tübingen Germany

Department of Paediatric Neurology Beatrix Children's Hospital University Medical Center Groningen University of Groningen Groningen The Netherlands

Department of Paediatrics Semmelweis University Dept of Genetics Cell and Immunobiology Semmelweis University Budapest Hungary

Department of Pediatric Neurosciences Fondazione IRCCS Istituto Neurologico Carlo Besta Milan Italy

Department of Rehabilitation Medicine Emma Children's Hospital Amsterdam Vrije Universiteit Amsterdam Amsterdam Movement Science Rehabilitation and Development Amsterdam The Netherlands

Donders Institute for Brain Cognition and Behaviour Radboud University Medical Center Nijmegen the Netherlands

Institute of Genomic Medicine and Rare Disorders Semmelweis University Budapest Hungary

Institute of Medical Genetics and Applied Genomics University of Tübingen Tübingen Germany

Osservatorio Malattie Rare Rarelab S R L Rome Italy

Patient Advocate at the European Reference Network Representing Individuals With Ataxia and Neurology Research Fellow at the National Ataxia Centre Tallaght University Dublin Ireland

Pediatric Neurology Department Institut de Recerca Hospital Sant Joan de Déu Barcelona Barcelona Spain

Pediatric Neurology Vall d'Hebron Institut de Recerca Hospital Universitari Vall d'Hebron Vall d'Hebron Barcelona Hospital Campus and Universitat Autònoma de Barcelona Bellaterra Spain

Research Unit of Neurorehabilitation IRCCS Bambino Gesù Children's Research Hospital Rome Italy

Sorbonne University INSERM CNRS Paris Brain Institute APHP Salpêtrière Hospital Paris France

Tartu University Hospital Children's Clinic Department of Pediatrics and Neurology Tartu Estonia

UMCL Children's Hospital Ljubljana and University of Ljubljana Ljubljana Slovenia

Unit of Medical Genetics and Neurogenetics Fondazione IRCCS Istituto Neurologico Carlo Besta Via Celoria 11 20133 Milan Italy

Unit of Neuromuscular and Neurodegenerative Disease IRCCS Bambino Gesù Children's Research Hospital Rome Italy

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