RecruitingNot Applicable

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

Switzerland500 participantsStarted 2020-04-14

Plain-language 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.

Who can participate

Age range36 Years

SexALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

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

What they're measuring

Personal data

Timeframe: At registration (Life-long; Up to 80 years)

Diagnosis

Timeframe: Until reaching of adulthood (0 to 18 years)

Age at diagnosis

Timeframe: Until reaching of adulthood (0 to 18 years)

First symptoms

Timeframe: Until reaching of adulthood (0 to 18 years)

Age at first symptoms

Timeframe: Until reaching of adulthood (0 to 18 years)

Diagnostic delay

Timeframe: Until reaching of adulthood (0 to 18 years)

Hospitalization

Timeframe: Until reaching of adulthood (0 to 18 years)

Rehabilitation

Timeframe: Until reaching of adulthood (0 to 18 years)

Trial details

NCT IDNCT05017142

SponsorUniversity of Bern

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2071-01-01

Contact for this trial

Lorena F Hulliger, MSc

+41316845678 lorena.hulliger@unibe.ch

View on ClinicalTrials.gov More Optic Neuritis trials

Plain-language summary

Who can participate

Age range36 Years

SexALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

What they're measuring

Personal data

Timeframe: At registration (Life-long; Up to 80 years)

Diagnosis

Timeframe: Until reaching of adulthood (0 to 18 years)

Age at diagnosis

Timeframe: Until reaching of adulthood (0 to 18 years)

First symptoms

Timeframe: Until reaching of adulthood (0 to 18 years)

Age at first symptoms

Timeframe: Until reaching of adulthood (0 to 18 years)

Diagnostic delay

Timeframe: Until reaching of adulthood (0 to 18 years)

Hospitalization

Timeframe: Until reaching of adulthood (0 to 18 years)

Rehabilitation

Timeframe: Until reaching of adulthood (0 to 18 years)