Swiss registry following children with inflammatory brain diseases
Collects health records of children in Switzerland with inflammatory brain diseases over time.
Key facts
- Who runs it
- University of Bern
- Where
- Aarau, Basel, Bellinzona, Bern, Chur, Fribourg, Geneva, Lausanne, Lucerne, Sankt Gallen, Winterthur, and Zurich, SwitzerlandSee the 13 sites
- Trial code
- Registry title
- Swiss Pediatric Inflammatory Brain Disease Registry (Swiss-Ped-IBrainD)
- Status
- Recruiting
- People taking part
- 500 people, planned
- Started
- 14 Apr 2020
- Expected to end
- 1 Jan 2071
- Type of study
- Observational
- Record updated
- 16 December 2024
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The registry is looking for people living or treated in Switzerland who have an inflammatory brain disease from a listed group. The disease must have started before age 18.
- Age
- Up to 36 years. The disease must have started before the age of 18.
- Sex
- All sexes can join.
- Disease stage
- One of the listed inflammatory brain diseases, for example optic neuritis, transverse myelitis, acute disseminated encephalomyelitis, multiple sclerosis or autoimmune encephalitis. Diagnosed from 2005 onward.
Main reasons for not taking part
- Neurological symptoms due to infections of the central nervous system
- Genetic or metabolic causes of central demyelinating diseases
- Neurological symptoms due to Guillain-Barré-Syndrome
The registry criteria, word for word
Show all 23 criteriaShow less
Who can take part
- 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
Who cannot take part
- Neurological symptoms due to infectious diseases of the CNS
- Genetic/metabolic causes of central demyelinating diseases
- Neurological symptoms due to Guillain-Barré-Syndrome
Where in Switzerland
- Kantonsspital AarauAarau, SwitzerlandContact: Esmeralda Nava, Dr. med.Taking people
- University Children's Hospital Basel (UKBB)Basel, SwitzerlandContact: Patricia Dill, Dr. med.Taking people
- Pediatric Institute of Southern Switzerland, Ospedale San GiovanniBellinzona, SwitzerlandContact: Barbara Goeggel Simonetti, PD Dr. med.Taking people
- Institute of Social and Preventive Medicine, University of BernBern, SwitzerlandContact: Lorena F HulligerTaking people
- University Children's Hospital, Inselspital BernBern, SwitzerlandContact: Gabriela Oesch Nemeth, Dr. med.Taking people
- Kantonsspital GraubundenChur, SwitzerlandContact: Susi Strozzi, Dr. med.Taking people
- Hôpital Fribourgeois/Freiburger SpitalFribourg, SwitzerlandContact: Mary Kurian, Dr. med.Not yet recruiting
- University Hospitals of Geneva (HUG)Geneva, SwitzerlandContact: Stéphanie Garcia-Tarodo, Dr. med.Taking people
- University Children's Hospital Lausanne (CHUV)Lausanne, SwitzerlandContact: Stéphane DarteyreTaking people
- Kinderspital ZentralschweizLucerne, SwitzerlandContact: Sandra BigiTaking people
- Children's Hospital of Eastern SwitzerlandSankt Gallen, SwitzerlandContact: Oliver Maier, Dr. med.Taking people
- Kantonsspital WinterthurWinterthur, SwitzerlandContact: Florian Bauder, Dr. med.Taking people
- University Children's Hospital ZurichZurich, SwitzerlandContact: Annette Hackenberg, Dr. med.Taking people
About the trial
What the trial wants to find out
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.
The group in the trial
- Patient population
Children, adolescents and adults diagnosed with an IBrainD from 2005 onward and with disease onset before age 18, who are born, treated or living in Switzerland
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?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- Swiss Pediatric Inflammatory Bain Disease Cohort Study
- Plain-language title
- Swiss registry following children with inflammatory brain diseasesGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 12 November 2026.
- Record updated
- 16 December 2024