National registry for pediatric inflammatory brain diseases in Switzerland
Swiss Pediatric Inflammatory Bain Disease Cohort Study
This study is collecting information on children with inflammatory brain diseases in Switzerland to see how to better diagnose and treat these conditions.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 500 (estimated) |
| Ages | N/A to 36 Years |
| Sex | All |
| Sponsor | University of Bern Academic / other |
| Locations | 13 sites (Aarau, Canton of Aargau and 12 other locations) |
| Trial ID | NCT05017142 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
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.
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 performed: Other national registries for similar conditions have shown success in improving patient outcomes and understanding disease epidemiology.
Eligibility criteria
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 this trial is running
Aarau, Canton of Aargau and 12 other locations
- 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)
- 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)
- Hôpital Fribourgeois - Freiburger Spital — Fribourg, Switzerland (Not_yet_recruiting)
- University Hospitals of Geneva (HUG) — Geneva, Switzerland (Recruiting)
- Kinderspital Zentralschweiz — Lucerne, Switzerland (Recruiting)
- University Children's Hospital Zurich — Zurich, Switzerland (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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.