Swiss-Ped-IBrainD
What it found
No result yet.
What it measured
Main measures
Personal data
At registration (Life-long; Up to 80 years)
Diagnosis
Until reaching of adulthood (0 to 18 years)
Age at diagnosis
Until reaching of adulthood (0 to 18 years)
First symptoms
Until reaching of adulthood (0 to 18 years)
Age at first symptoms
Until reaching of adulthood (0 to 18 years)
Diagnostic delay
Until reaching of adulthood (0 to 18 years)
Hospitalization
Until reaching of adulthood (0 to 18 years)
RelapsesRehabilitation
Until reaching of adulthood (0 to 18 years)
RelapsesDeath date
Life-long; Up to 80 years
Death cause
Life-long; Up to 80 years
Change in EDSS
Until reaching of adulthood (0 to 18 years)
Disability progressionChange in Neurostatus
Until reaching of adulthood (0 to 18 years)
Change in medication
Until reaching of adulthood (0 to 18 years)
Change in Education
Until reaching of adulthood (0 to 18 years)
Change in MRI data
Until reaching of adulthood (0 to 18 years)
MRI lesionsChange in laboratory test data
Until reaching of adulthood (0 to 18 years)
Electrophysiological testing
Until reaching of adulthood (0 to 18 years)
Other measures (1)
Future questionnaires
Life-long; Up to 80 years; Will mainly concern childhood (until reaching of adulthood; 0 to 18 years)
Quality of life (reported by participants)
Who could take part
MS (type not specified) · Up to 36
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
As registered. Criteria can change, so ask the trial team or your neurologist.
Contact details on the registryAbout this trial
In the sponsor's words
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.
Papers
Loading reviews and guidelines…
History
Started
Apr 2020
Main results due
Jan 2071
Finished
Jan 2071
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