Liens

Voici des liens utiles pour les patients :

• Société suisse de la sclérose en plaques : https://www.multiplesklerose.ch/fr/
• Registre suisse des maladies rares: https://www.raredisease.ch/fr/le-registre-suisse-des-maldies-rares-rsmr/
• ProRaris: https://www.proraris.ch/fr/homepage.html
• Association de soutien aux enfants atteints de maladies rares: https://www.kmsk.ch/fr

Voici des liens utiles pour les chercheurs :

• Entrée dans ClinicalTrials.gov : https://clinicaltrials.gov/ct2/show/NCT05017142
• Entrée dans la FMH Plateforme suisse des registres médicaux : https://www.fmh.ch/themen/qualitaet-saqm/register/medizinische-register.cfm?fuseaction_sea=detail&id=126#
• SwissPedRegsitry: https://www.swisspedregistry.ch/
• Un article sur le SwissPedRegistry dans « Pédiatrie Suisse » : https://www.paediatrieschweiz.ch/swisspedregistry/
• Article « Sclérose en plaques de l’enfant et de l’adolescent – nouvelles thérapies et diagnostics différentiels importants » dans « Pédiatrie Suisse » : https://www.paediatrieschweiz.ch/fr/sclerose-en-plaques-de-lenfant-et-de-ladolescent/

Publications

• Hulliger, L. F., Tscherter, A., Kuehni, C. E., & Bigi, S., on behalf of the Swiss Pediatric Inflammatory Brain Disease Registry (2024). Protocol on establishing a national disease registry–Swiss Pediatric Inflammatory Brain Disease Registry. PLoS ONE 19(4): e0290908. https://doi.org/10.1371/journal.pone.0290908
• Hulliger, L., Bauder; F., Capone Mori, A., et. al. (2023). The Swiss Pediatric Inflammatory Brain Disease Cohort Study: First Insights into Epidemiology. Neuropediatrics 54 Supplement 01, S1-S32. https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0043-1777152
• Bigi, S., Bauder, F., Capone Mori, A., et al. (2021) The Swiss Pediatric Inflammatory Brain Disease Cohort Study: Setting up a National Registry for Children and Adolescents with Pediatric Onset MS and Related Disorders. Neuropediatrics. 52(S 01):P1.21. http://dx.doi.org/10.1055/s-0041-1739583

Littérature

• Mrosková, S., Klímová, E., Majerníková, Ľ., & Tkáčová, Ľ. (2021). Quality of Life of Children and Adolescents with Multiple Sclerosis-A Literature Review of the Quantitative Evidence. International journal of environmental research and public health, 18(16), 8645. https://doi.org/10.3390/ijerph18168645
  PubMed abstract: https://pubmed.ncbi.nlm.nih.gov/34444393/
• McKay, K. A., Hillert, J., & Manouchehrinia, A. (2019). Long-term disability progression of pediatric-onset multiple sclerosis. Neurology, 92(24), e2764–e2773. https://doi.org/10.1212/WNL.0000000000007647
  PubMed abstract: https://pubmed.ncbi.nlm.nih.gov/31092624/
• Trojano, M., Bergamaschi, R., Amato, M. P., Comi, G., Ghezzi, A., Lepore, V., Marrosu, M. G., Mosconi, P., Patti, F., Ponzio, M., Zaratin, P., Battaglia, M. A., & Italian Multiple Sclerosis Register Centers Group (2019). The Italian multiple sclerosis register. Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology, 40(1), 155–165. https://doi.org/10.1007/s10072-018-3610-0
  PubMed abstract: https://pubmed.ncbi.nlm.nih.gov/30426289/#:~:text=Main%20objective%20of%20the%20Italian,projects%20in%20high%2Dpriority%20areas
• Hamdy, S. M., Abdel-Naseer, M., Shalaby, N. M., Elmazny, A., Girgis, M., Nada, M. A., Hassan, A., Mourad, H. S., Hegazy, M. I., Abdelalim, A., Kishk, N. A., Abokrysha, N. T., Genedy, S. A., Essawy, E. A., & Shehata, H. S. (2018). Pediatric-onset multiple sclerosis in Egypt: a multi-center registry of 186 patients. Neuropsychiatric disease and treatment, 14, 631–640. https://doi.org/10.2147/NDT.S160060
  PubMed abstract: https://pubmed.ncbi.nlm.nih.gov/29503547/
• Bigi, S., Hladio, M., Twilt, M., Dalmau, J., & Benseler, S. M. (2015). The growing spectrum of antibody-associated inflammatory brain diseases in children. Neurology(R) neuroimmunology & neuroinflammation, 2(3), e92. https://doi.org/10.1212/NXI.0000000000000092
  PubMed abstract: https://pubmed.ncbi.nlm.nih.gov/25909091/
• Twilt, M., & Benseler, S. M. (2014). Childhood inflammatory brain diseases: pathogenesis, diagnosis and therapy. Rheumatology (Oxford, England), 53(8), 1359–1368. https://doi.org/10.1093/rheumatology/ket398
  PubMed abstract: https://pubmed.ncbi.nlm.nih.gov/24324213/
• Twilt, M., Sheikh, S., Benseler, S., & All the members of the Brainworks Investigator group (2013). PReS-FINAL-2362: The spectrum of childhood inflammatory brain diseases; an increasingly recognised field. Pediatric Rheumatology Online Journal, 11(Suppl 2), P352. https://doi.org/10.1186/1546-0096-11-S2-P352
  PubMed article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4043879/
• Cellucci, T., Tyrrell, P. N., Twilt, M., Soon, G. S., Yau, I., Sheikh, S., & Benseler, S. M. (2012). Distinguishing features in the presentations of childhood inflammatory brain diseases at a tertiary-care centre. Pediatric Rheumatology Online Journal, 10(Suppl 1), A81. https://doi.org/10.1186/1546-0096-10-S1-A81
  PubMed article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3403112/
• Ketelslegers, I. A., Catsman-Berrevoets, C. E., Neuteboom, R. F., Boon, M., van Dijk, K. G., Eikelenboom, M. J., Gooskens, R. H., Niks, E. H., Overweg-Plandsoen, W. C., Peeters, E. A., Peeters-Scholte, C. M., Poll-The, B. T., de Rijk-van Andel, J. F., Samijn, J. P., Snoeck, I. N., Stroink, H., Vermeulen, R. J., Verrips, A., Vles, J. S., Willemsen, M. A., … Hintzen, R. Q. (2012). Incidence of acquired demyelinating syndromes of the CNS in Dutch children: a nationwide study. Journal of neurology, 259(9), 1929–1935. https://doi.org/10.1007/s00415-012-6441-6
  PubMed abstract: https://pubmed.ncbi.nlm.nih.gov/22349866/
• Langer-Gould, A., Zhang, J. L., Chung, J., Yeung, Y., Waubant, E., & Yao, J. (2011). Incidence of acquired CNS demyelinating syndromes in a multiethnic cohort of children. Neurology, 77(12), 1143–1148. https://doi.org/10.1212/WNL.0b013e31822facdd
  PubMed article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3265045/#:~:text=The%20incidence%20rate%20of%20pediatric,95%25%20CI%201.23%E2%80%931.95
• Ruggieri, M., Iannetti, P., Polizzi, A., Pavone, L., Grimaldi, L. M., & Italian Society of Paediatric Neurology Study Group on Childhood Multiple Sclerosis (2004). Multiple sclerosis in children under 10 years of age. Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology, 25 Suppl 4, S326–S335. https://doi.org/10.1007/s10072-004-0335-z
  PubMed abstract: https://pubmed.ncbi.nlm.nih.gov/15727227/