Clinical trial Recruiting at 12 sites Observational Ages Any age to 36

National registry for pediatric inflammatory brain diseases in Switzerland

Official title: Swiss Pediatric Inflammatory Bain Disease Cohort Study

Run by University of Bern · NCT05017142 · Data updated 2026-11-12

This study is collecting information on children with inflammatory brain diseases in Switzerland to see how to better diagnose and treat these conditions.

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Quick facts

Study typeObservational
AgesAny age to 36 Years
SexAll
Enrollment500 (estimated)
SponsorUniversity of Bern
Academic / other
Locations13 sites (Aarau, Canton of Aargau and 12 other locations)
StatusRecruiting
StartedApril 14, 2020
Main results expectedJanuary 1, 2071
Study endsJanuary 1, 2071
Registry record updatedDecember 16, 2024
Trial IDNCT05017142 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates include pediatric patients diagnosed with specified inflammatory brain diseases before the age of 18 and living or being treated in Switzerland.

Probably not a fit

Patients diagnosed with inflammatory brain diseases after the age of 18 or those not residing in Switzerland may not benefit from this registry.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The Swiss Pediatric Inflammatory Brain Disease Registry collects comprehensive data on pediatric patients diagnosed with inflammatory brain diseases, including conditions like optic neuritis and multiple sclerosis. Implemented in 2020, it aims to improve diagnosis, treatment, and management of these conditions through systematic data collection across multiple centers in Switzerland. The registry facilitates research and enhances collaboration among clinicians and researchers, ultimately striving to optimize healthcare and quality of life for affected children.

Why it matters

Potential benefit: If successful, this registry could lead to improved diagnosis and treatment strategies for children with inflammatory brain diseases.

How similar studies have gone: Other national registries for similar conditions have shown success in improving patient outcomes and understanding disease epidemiology.

Who can join: the full rules

Show full inclusion / exclusion criteria
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

Where it's running

  • Kantonsspital Aarau
    Aarau, Canton of Aargau, Switzerland
    Recruiting
  • Children's Hospital of Eastern Switzerland
    Sankt Gallen, Canton of St. Gallen, Switzerland
    Recruiting
  • University Children's Hospital Lausanne (CHUV)
    Lausanne, Canton of Vaud, Switzerland
    Recruiting
  • Kantonsspital Winterthur
    Winterthur, Canton of Zurich, Switzerland
    Recruiting
  • Pediatric Institute of Southern Switzerland, Ospedale San Giovanni
    Bellinzona, Canton Ticino, Switzerland
    Recruiting
  • Kantonsspital Graubünden
    Chur, Kanton Graubünden, Switzerland
    Recruiting
Show 7 more locations
  • University Children's Hospital Basel, UKBB
    Basel, Switzerland
    Recruiting
  • University Children's Hospital, Inselspital Bern
    Bern, Switzerland
    Recruiting
  • Institute of Social and Preventive Medicine, University of Bern
    Bern, Switzerland
    Recruiting
  • University Hospitals of Geneva (HUG)
    Geneva, Switzerland
    Recruiting
  • Kinderspital Zentralschweiz
    Lucerne, Switzerland
    Recruiting
  • University Children's Hospital Zurich
    Zurich, Switzerland
    Recruiting
  • Hôpital Fribourgeois - Freiburger Spital
    Fribourg, Switzerland
    Not yet recruiting

Study contacts

  • Principal investigator: Sandra Bigi, PD MD — ISPM, University of Bern, Bern; Kinderspital Zentralschweiz, Luzern
  • Study coordinator: Lorena F Hulliger, MSc
  • Email: lorena.hulliger@unibe.ch
  • Phone: +41316845678

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.