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RecruitingNCT05017142

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

Swiss Pediatric Inflammatory Bain Disease Cohort Study

Sponsor

University of Bern

Enrollment

500 participants

Start Date

Apr 14, 2020

Study Type

OBSERVATIONAL

Conditions

Multiple SclerosisOptic NeuritisTransverse MyelitisAcute Disseminated EncephalomyelitisNeuromyelitis Optica Spectrum DisorderAnti-NMDAR EncephalitisAnti-GAD65 Associated Autoimmune EncephalitisAnti-AMPAR-1/2 Associated Autoimmune EncephalitisAnti-Lgi-1 Associated Autoimmune EncephalitisAnti-CASPR-2 Associated Autoimmune EncephalitisAnti-GABAR-1/2 Associated Autoimmune EncephalitisOnconeuronal Antibody (Hu, Ri, Yo, Amphiphysin, CRMP-5, Ma-1, Ma-2, SOX-1) Associated Autoimmune EncephalitisHashimoto EncephalitisCNS VasculitisCNS SarcoidosisCNS LupusRasmussen EncephalitisMyelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD)

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.

Eligibility

Max Age: 36 Years

Inclusion Criteria20

  • 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 Criteria3

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

Locations(13)

Kantonsspital Aarau

Aarau, Canton of Aargau, Switzerland

Children's Hospital of Eastern Switzerland

Sankt Gallen, Canton of St. Gallen, Switzerland

University Children's Hospital Lausanne (CHUV)

Lausanne, Canton of Vaud, Switzerland

Kantonsspital Winterthur

Winterthur, Canton of Zurich, Switzerland

Pediatric Institute of Southern Switzerland, Ospedale San Giovanni

Bellinzona, Canton Ticino, Switzerland

Kantonsspital Graubünden

Chur, Kanton Graubünden, Switzerland

University Children's Hospital Basel, UKBB

Basel, Switzerland

University Children's Hospital, Inselspital Bern

Bern, Switzerland

Institute of Social and Preventive Medicine, University of Bern

Bern, Switzerland

Hôpital Fribourgeois - Freiburger Spital

Fribourg, Switzerland

University Hospitals of Geneva (HUG)

Geneva, Switzerland

Kinderspital Zentralschweiz

Lucerne, Switzerland

University Children's Hospital Zurich

Zurich, Switzerland

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NCT05017142

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