What registries reveal on child onset MS
ECTRIMS Online Library. Magyari M. 09/13/19; 279534; 271
Dr. Melinda Magyari
Dr. Melinda Magyari
Contributions
Abstract

Abstract: 271

Type: Scientific Session

Abstract Category: Scientific Session 11: Registry-based MS research

M. Magyari1,2

1Danish Multiple Sclerosis Center, Copenhagen University Hospital, Rigshospitalet, 2The Danish Multiple Sclerosis Registry, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark

Clinical manifestations of multiple sclerosis (MS) before the age of 18 years are uncommon with an incidence before the age of 18 years varying between countries from 2.7 to 10 %. When reporting epidemiological measures, use of reliable data sources is crucial. There is a growing number of MS registries and databases and the distribution of the demographic and clinical characteristics depends on the size and completeness of the presented cohort. In addition, the organisation of paediatric MS care should be taken into consideration when comparing median age at clinical milestones in different populations, as the age definition of paediatric onset varies between 15-18 years in different countries. A Danish nationwide population-based study from 2017 reported an incidence rate onset MS before the age of 18 years of 0.79/100,000, accounting for 2.3% of the total Danish MS population between 1977-2015, with an higher incidence seen around puberty, especially in girls.
Relatively little is known about the use of disease-modifying therapy (DMT) in children and adolescents with MS. An increasing number of DMTs are now available, but due to the limited number of randomized clinical trials and subsequent approved indication in children, several are being used off-label for children. The number of studies, which characterize the clinical features of the paediatric onset MS and describe the patterns of DMT utilisation in patients who started DMT before the age of 18 years in a well-defined population, is limited. Only few observational studies have reported national experiences on treatment of the paediatric MS population. Due to the small sample size of the national or regional paediatric MS populations, collaborative projects are important to provide answers on drug specific effectiveness. Longitudinal follow-up studies of efficacy and safety of DMT initiated before the age of 18 years would provide physicians with greater confidence in starting DMT early in children.
Disclosure: Melinda Magyari has served on scientific advisory board for Biogen, Sanofi, Teva, Roche, Novartis, Merck, has received honoraria for lecturing from Biogen, Merck, Novartis, Sanofi, Genzyme, has received research support and support for congress participation from Biogen, Genzyme, Teva, Roche, Merck, Novartis.

Abstract: 271

Type: Scientific Session

Abstract Category: Scientific Session 11: Registry-based MS research

M. Magyari1,2

1Danish Multiple Sclerosis Center, Copenhagen University Hospital, Rigshospitalet, 2The Danish Multiple Sclerosis Registry, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark

Clinical manifestations of multiple sclerosis (MS) before the age of 18 years are uncommon with an incidence before the age of 18 years varying between countries from 2.7 to 10 %. When reporting epidemiological measures, use of reliable data sources is crucial. There is a growing number of MS registries and databases and the distribution of the demographic and clinical characteristics depends on the size and completeness of the presented cohort. In addition, the organisation of paediatric MS care should be taken into consideration when comparing median age at clinical milestones in different populations, as the age definition of paediatric onset varies between 15-18 years in different countries. A Danish nationwide population-based study from 2017 reported an incidence rate onset MS before the age of 18 years of 0.79/100,000, accounting for 2.3% of the total Danish MS population between 1977-2015, with an higher incidence seen around puberty, especially in girls.
Relatively little is known about the use of disease-modifying therapy (DMT) in children and adolescents with MS. An increasing number of DMTs are now available, but due to the limited number of randomized clinical trials and subsequent approved indication in children, several are being used off-label for children. The number of studies, which characterize the clinical features of the paediatric onset MS and describe the patterns of DMT utilisation in patients who started DMT before the age of 18 years in a well-defined population, is limited. Only few observational studies have reported national experiences on treatment of the paediatric MS population. Due to the small sample size of the national or regional paediatric MS populations, collaborative projects are important to provide answers on drug specific effectiveness. Longitudinal follow-up studies of efficacy and safety of DMT initiated before the age of 18 years would provide physicians with greater confidence in starting DMT early in children.
Disclosure: Melinda Magyari has served on scientific advisory board for Biogen, Sanofi, Teva, Roche, Novartis, Merck, has received honoraria for lecturing from Biogen, Merck, Novartis, Sanofi, Genzyme, has received research support and support for congress participation from Biogen, Genzyme, Teva, Roche, Merck, Novartis.

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