Neuropediatrics 2021; 52(S 01): S1-S53
DOI: 10.1055/s-0041-1739583
Poster Abstracts

The Swiss Pediatric Inflammatory Brain Disease Cohort Study: Setting up a National Registry for Children and Adolescents with Pediatric Onset MS and Related Disorders

S. Bigi
1   Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
2   Department of Neurology, University Hospital Bern, University of Bern, Bern, Switzerland
,
F. Bauder
3   Department of Child Neurology, Luzerner Kantonsspital, Kinderspital Luzern, Luzern, Switzerland
,
A. Capone Mori
4   Department of Child Neurology, Kantonsspital Aarau, Clinic for Children and Adolescents, Aarau, Switzerland
,
P. Dill
4   Department of Child Neurology, Kantonsspital Aarau, Clinic for Children and Adolescents, Aarau, Switzerland
,
B. Goeggel
5   Department of Child Neurology, University Children's Hospital Basel, University of Basel, Basel, Switzerland
,
A. Hackenberg
6   Department of Child Neurology, University Children's Hospital of Zurich, University of Zurich, Zurich, Switzerland
,
L. Hulliger
1   Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
,
O. Maier
7   Department of Child Neurology, Children's Hospital of Eastern Switzerland, St Gallen, Switzerland
,
S. Strozzi
8   Division of Neuropediatrics and Neuropsychology, Department of Child and Adolescent Medicine, Kantonsspital Graubünden, Chur, Switzerland
,
C. Kuehni
1   Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
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Background/Purpose: Pediatric-onset MS (POMS) is a severe disease affecting children and adolescents in a period of essential brain development. Timely diagnosis and treatment initiation minimize neurological sequelae and improve patient outcomes. However, the diagnosis of POMS can be challenging, especially in young children. A systematic assessment of POMS patients versus patients with other inflammatory brain diseases (IBrainDs) will enable faster and more reliable diagnosis. A national registry will deepen the understanding of POMS epidemiology, clinical presentation, and management.

Methods: This is a multicenter cohort study including prospective and retrospective data. Inclusion criteria: patients with POMS or another specified IBrainD with an onset before 18 years of age. Exclusion criteria: patients with (1) infectious diseases of the CNS; (2) genetic/metabolic causes of central demyelinating diseases; (3) neurological symptoms due to Guillain–Barré syndrome. Demographic and medical data are centrally collected.

Results: After the ethics committee approval at the end of 2020, eight out of the 11 participating centers have already been initiated. So far, 165 potential participants with an IBrainD have been identified. Of those, 69 (41.8%) have a POMS diagnosis. Retrospective patient identification was challenging due to a lack of systematic and unified coding approaches.

Conclusion/Outlook: The national registry will answer pressing questions about the epidemiology and clinical phenotypes of POMS and related diseases in Switzerland. It also offers the opportunity to assess treatment and outcomes of pediatric IBrainD patients in a longitudinal fashion. Furthermore, the registry facilitates the national and international collaboration by providing a research platform.



Publication History

Article published online:
28 October 2021

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