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NCT05017142Recrutement en cours

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

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Résumé

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.

Critères d'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

Critères d'exclusion

• Neurological symptoms due to infectious diseases of the CNS • Genetic/metabolic causes of central demyelinating diseases • Neurological symptoms due to Guillain-Barré-Syndrome

Contacts

Les coordonnées de l'équipe de l'essai s'affichent sur demande.

Voir la fiche officielle de l'essai
Statut
Recrutement en cours
Phase
—
Type d'étude
Observationnelle
Pays
Suisse
Promoteur
University of Bern(Autre)
N° de protocole
2019-00377
Pathologies
Optic Neuritis, Transverse Myelitis, Acute Disseminated Encephalomyelitis, Multiple Sclerosis, Neuromyelitis Optica Spectrum Disorder, Anti-NMDAR 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 Encephalitis, CNS Vasculitis, CNS Sarcoidosis, CNS Lupus, Rasmussen Encephalitis, Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD)
Interventions
—

Collaborateurs

Schweizerische Multiple Sklerose Gesellschaft, Insel Gruppe AG, University Hospital Bern, Novartis, Anna Mueller Grocholski-Stiftung, Gottfried und Julia Bangerter- Rhyner-Stiftung, Basel, Biogen, Roche Pharma (Switzerland) Ltd, Fondation Johanna Dürmüller-Bol, Kantonsspital Aarau, University Children's Hospital Basel, Ente Ospedaliero Cantonale, Bellinzona, Kantonsspital Graubünden, University Hospital, Geneva, Centre Hospitalier Universitaire Vaudois, Ostschweizer Kinderspital, Kantonsspital Winterthur KSW, Sanofi, Hôpital Fribourgeois, University Children's Hospital, Zurich, Luzerner Kantonsspital

Lieux · 12

  • Aarau, SuisseKantonsspital AarauRecrute dans ce centre
  • Sankt Gallen, SuisseChildren's Hospital of Eastern SwitzerlandRecrute dans ce centre
  • Lausanne, SuisseUniversity Children's Hospital Lausanne (CHUV)Recrute dans ce centre
  • Winterthur, SuisseKantonsspital WinterthurRecrute dans ce centre
  • Bellinzona, SuissePediatric Institute of Southern Switzerland, Ospedale San GiovanniRecrute dans ce centre
  • Chur, SuisseKantonsspital GraubündenRecrute dans ce centre
  • Basel, SuisseUniversity Children's Hospital Basel, UKBBRecrute dans ce centre
  • Bern, SuisseUniversity Children's Hospital, Inselspital BernRecrute dans ce centre
  • Bern, SuisseInstitute of Social and Preventive Medicine, University of BernRecrute dans ce centre
  • Geneva, SuisseUniversity Hospitals of Geneva (HUG)Recrute dans ce centre
  • Lucerne, SuisseKinderspital ZentralschweizRecrute dans ce centre
  • Zurich, SuisseUniversity Children's Hospital ZurichRecrute dans ce centre

Au total, dans le monde, 12 des 13 centres listés au registre recrutent ; l'autre ne recrute pas actuellement.

Statut par centre selon le registre ClinicalTrials.gov (dernière mise à jour publiée : 16 décembre 2024).

Ce statut peut avoir changé et ne dit rien de votre éligibilité : avant toute démarche, vérifiez avec votre oncologue ou le centre.

Autres identifiants

  • 2019 · financement NIH

Voir aussi

Autres versions

Ces résultats sont indicatifs et ne remplacent pas un avis médical — à discuter avec votre médecin.