Health TrialsbyHealthPanel

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

ConditionsOptic NeuritisTransverse MyelitisAcute Disseminated EncephalomyelitisMultiple SclerosisNeuromyelitis Optica Spectrum DisorderAnti-NMDAR EncephalitisAnti-GAD65 Associated Autoimmune EncephalitisAnti-AMPAR-1/2 Associated Autoimmune EncephalitisAnti-Lgi-1 Associated Autoimmune EncephalitisAnti-CASPR-2 Associated Autoimmune EncephalitisAnti-GABAR-1/2 Associated Autoimmune EncephalitisOnconeuronal Antibody (Hu, Ri, Yo, Amphiphysin, CRMP-5, Ma-1, Ma-2, SOX-1) Associated Autoimmune EncephalitisHashimoto EncephalitisCNS VasculitisCNS SarcoidosisCNS LupusRasmussen EncephalitisMyelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD)
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeUp to 36
SponsorUniversity of Bern

About this trial

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.

Eligibility criteria

This trial does not accept healthy volunteers

Qualifiers

Written informed consent by patients (and/or legal representative(s), if applicable)

Optic Neuritis

Transverse Myelitis

Acute disseminated encephalomyelitis

Disqualifiers

Neurological symptoms due to infectious diseases of the CNS

Genetic/metabolic causes of central demyelinating diseases

Neurological symptoms due to Guillain-Barré-Syndrome

Trial population

All patients living and/or treated in Switzerland with a listed IBrainD diagnosed from 2005 onward and a disease onset before the age of 18.

Trial design

Design model

Cohort

Time perspective

Other

Treatments tested in this trial

Not listed

Trial groups

500 Participants
are grouped into 1 trial group
Group A: Patient population

Trial outcomes

Primary outcomes

1

Personal data

Registering patient's personal data

Time frame
At registration (Life-long; Up to 80 years)
2

Diagnosis

Diagnosis of IBrainD

Time frame
Until reaching of adulthood (0 to 18 years)
3

Age at diagnosis

Age at diagnosis (months and years)

Time frame
Until reaching of adulthood (0 to 18 years)
4

First symptoms

Symptoms before diagnosis

Time frame
Until reaching of adulthood (0 to 18 years)

Secondary outcomes

1

Future questionnaires

Data from validated instrument such as the Pediatric Quality of Life Inventory (PedsQL); Scale from 0-100, where 100 is the best possible outcome and 0 the worst possible outcome.

Time frame
Life-long; Up to 80 years; Will mainly concern childhood (until reaching of adulthood; 0 to 18 years)

Other outcomes

Sponsors and contacts

Click on the lead sponsor to view all of their trials.

University of Bern

Lead sponsor

Schweizerische Multiple Sklerose Gesellschaft

Collaborator

Insel Gruppe AG, University Hospital Bern

Collaborator

Novartis

Collaborator

Anna Mueller Grocholski-Stiftung

Collaborator

Gottfried und Julia Bangerter- Rhyner-Stiftung, Basel

Collaborator

Biogen

Collaborator

Roche Pharma (Switzerland) Ltd

Collaborator

Fondation Johanna Dürmüller-Bol

Collaborator

Kantonsspital Aarau

Collaborator

University Children's Hospital Basel

Collaborator

Ente Ospedaliero Cantonale, Bellinzona

Collaborator

Kantonsspital Graubünden

Collaborator

University Hospital, Geneva

Collaborator

Centre Hospitalier Universitaire Vaudois

Collaborator

Ostschweizer Kinderspital

Collaborator

Kantonsspital Winterthur KSW

Collaborator

Sanofi

Collaborator

Hôpital Fribourgeois

Collaborator

University Children's Hospital, Zurich

Collaborator

Luzerner Kantonsspital

Collaborator

Source ClinicalTrials.gov
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