Swiss registry following children with inflammatory brain diseases
Collects health records of children in Switzerland with inflammatory brain diseases over time.
Plain-language title generated from the registry record
Registry title: Swiss Pediatric Inflammatory Brain Disease Registry (Swiss-Ped-IBrainD)
Key facts
- Where
- Aarau, Basel, Bellinzona, Bern, Chur, Fribourg, Geneva, Lausanne, Lucerne, Sankt Gallen, Winterthur, and Zurich, SwitzerlandSee the 13 sites
Where in Switzerland
- Kantonsspital AarauAarau, SwitzerlandTaking people
- University Children's Hospital Basel (UKBB)Basel, SwitzerlandTaking people
- Pediatric Institute of Southern Switzerland, Ospedale San GiovanniBellinzona, SwitzerlandTaking people
- Institute of Social and Preventive Medicine, University of BernBern, SwitzerlandTaking people
- University Children's Hospital, Inselspital BernBern, SwitzerlandTaking people
- Kantonsspital GraubundenChur, SwitzerlandTaking people
- Hôpital Fribourgeois/Freiburger SpitalFribourg, SwitzerlandNot yet recruiting
- University Hospitals of Geneva (HUG)Geneva, SwitzerlandTaking people
- University Children's Hospital Lausanne (CHUV)Lausanne, SwitzerlandTaking people
- Kinderspital ZentralschweizLucerne, SwitzerlandTaking people
- Children's Hospital of Eastern SwitzerlandSankt Gallen, SwitzerlandTaking people
- Kantonsspital WinterthurWinterthur, SwitzerlandTaking people
- University Children's Hospital ZurichZurich, SwitzerlandTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- University of Bern
- Trial code
- NCT05017142
- Record updated
- 16 December 2024
- Original description
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.Read full original descriptionShow less
Swiss Pediatric Inflammatory Bain Disease Cohort Study
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: 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: Neurological symptoms due to infectious diseases of the CNS; Genetic/metabolic causes of central demyelinating diseases; Neurological symptoms due to Guillain-Barré-Syndrome.