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NCT05017142Recruiting

Swiss Pediatric Inflammatory Brain Disease Registry (Swiss-Ped-IBrainD)

Official recordSimplified version

Summary

The Swiss-Ped-IBrainD is a national patient registry that collects information on diagnosis, symptoms, treatment, and follow-up of pediatric patients with an inflammatory brain disease in Switzerland. It was first implemented in 2020 in the pediatric clinic of the university hospital in Bern. Further centers all over Switzerland opened for recruitment after that: Aarau, Basel, Bellinzona, Chur, Geneva, Lausanne, Lucerne, St. Gallen, Winterthur and Zurich. The center in Fribourg is expected open for recruitment in 2025. The registry provides data for national and international monitoring and research. It supports research on inflammatory brain diseases in Switzerland and the exchange of knowledge between clinicians, researchers, and therapists. The registry aims to improve the treatment of children with inflammatory brain diseases and optimizing their health care and quality of life.

Inclusion criteria

All patients living and/or treated in Switzerland with an IBrainD specified in the following list diagnosed from 2005 onward and with a disease onset before the age of 18. • Written informed consent by patients (and/or legal representative(s), if applicable) • Optic Neuritis • Transverse Myelitis • Acute disseminated encephalomyelitis • Multiple Sclerosis • Neuromyelitis Optica Spectrum Disorders • Myelin oligodendrocyte glycoprotein antibody-associated disease • Anti-NMDA-R Encephalitis • Anti-GAD65 Associated Autoimmune Encephalitis • Anti-AMPAR-1/2 Associated Autoimmune Encephalitis • Anti-Lgi-1 Associated Autoimmune Encephalitis • Anti-CASPR-2 Associated Autoimmune Encephalitis • Anti-GABAR-1/2 Associated Autoimmune Encephalitis • Onconeuronal Antibody (Hu, Ri, Yo, Amphiphysin, CRMP-5, Ma-1, Ma-2, SOX-1) Associated Autoimmune Encephalitis • Hashimoto Encephalopathy • CNS Vasculitis • CNS Sarcoidosis • CNS Lupus • Rasmussen Encephalitis

Exclusion criteria

• Neurological symptoms due to infectious diseases of the CNS • Genetic/metabolic causes of central demyelinating diseases • Neurological symptoms due to Guillain-Barré-Syndrome

Contacts

The trial team's contact details are shown on request.

See the official trial record
Status
Recruiting
Phase
—
Study type
Observational
Countries
Switzerland
Sponsor
University of Bern(Other)
Protocol no.
2019-00377
Conditions
Optic Neuritis, Transverse Myelitis, Acute Disseminated Encephalomyelitis, Multiple Sclerosis, Neuromyelitis Optica Spectrum Disorder, Anti-NMDAR Encephalitis, Anti-GAD65 Associated Autoimmune Encephalitis, Anti-AMPAR-1/2 Associated Autoimmune Encephalitis, Anti-Lgi-1 Associated Autoimmune Encephalitis, Anti-CASPR-2 Associated Autoimmune Encephalitis, Anti-GABAR-1/2 Associated Autoimmune Encephalitis, Onconeuronal Antibody (Hu, Ri, Yo, Amphiphysin, CRMP-5, Ma-1, Ma-2, SOX-1) Associated Autoimmune Encephalitis, Hashimoto Encephalitis, CNS Vasculitis, CNS Sarcoidosis, CNS Lupus, Rasmussen Encephalitis, Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD)
Interventions
—

Collaborators

Schweizerische Multiple Sklerose Gesellschaft, Insel Gruppe AG, University Hospital Bern, Novartis, Anna Mueller Grocholski-Stiftung, Gottfried und Julia Bangerter- Rhyner-Stiftung, Basel, Biogen, Roche Pharma (Switzerland) Ltd, Fondation Johanna Dürmüller-Bol, Kantonsspital Aarau, University Children's Hospital Basel, Ente Ospedaliero Cantonale, Bellinzona, Kantonsspital Graubünden, University Hospital, Geneva, Centre Hospitalier Universitaire Vaudois, Ostschweizer Kinderspital, Kantonsspital Winterthur KSW, Sanofi, Hôpital Fribourgeois, University Children's Hospital, Zurich, Luzerner Kantonsspital

Locations · 12

  • Aarau, SwitzerlandKantonsspital AarauRecruiting at this site
  • Sankt Gallen, SwitzerlandChildren's Hospital of Eastern SwitzerlandRecruiting at this site
  • Lausanne, SwitzerlandUniversity Children's Hospital Lausanne (CHUV)Recruiting at this site
  • Winterthur, SwitzerlandKantonsspital WinterthurRecruiting at this site
  • Bellinzona, SwitzerlandPediatric Institute of Southern Switzerland, Ospedale San GiovanniRecruiting at this site
  • Chur, SwitzerlandKantonsspital GraubündenRecruiting at this site
  • Basel, SwitzerlandUniversity Children's Hospital Basel, UKBBRecruiting at this site
  • Bern, SwitzerlandUniversity Children's Hospital, Inselspital BernRecruiting at this site
  • Bern, SwitzerlandInstitute of Social and Preventive Medicine, University of BernRecruiting at this site
  • Geneva, SwitzerlandUniversity Hospitals of Geneva (HUG)Recruiting at this site
  • Lucerne, SwitzerlandKinderspital ZentralschweizRecruiting at this site
  • Zurich, SwitzerlandUniversity Children's Hospital ZurichRecruiting at this site

In total, worldwide, 12 of the 13 sites listed in the registry are recruiting; the other one is not currently recruiting.

Site status per the ClinicalTrials.gov registry (last update posted: December 16, 2024).

This status may have changed and says nothing about your eligibility: before taking any step, check with your oncologist or the site.

Other identifiers

  • 2019 · NIH grant

See also

Other versions

These results are indicative and do not replace medical advice — discuss them with your doctor.