6533b859fe1ef96bd12b8231
RESEARCH PRODUCT
The Italian multiple sclerosis register
M TrojanoR BergamaschiMp AmatoG ComiA GhezziV Lepore 7Mg MarrosuP MosconiF PattiM PonzioP ZaratinMa1 BattagliaItalian Multiple Sclerosis Register Centers Group. Acquistapace DU AgugliaMp AmatoP AnnunziataB ArditoC AvolioR BalgeraF BandiniP BanfiP BaroneP BellantonioR BergamaschiA BertolottoP BertoraR BombardiG Bosco ZimatoreRb BossioP BramantiV Brescia MorraAm BrioschiM BruzzoneM BuccafuscaV BusilloG CaneveLm CaniattiL CaponeF CaponeA CappellaniD CargneluttiG CavalettiP CavallaMg CelaniD CentonzeL ChiveriR ClericiM ClericoE CoccoG ComiC ComiMg ConiglioS CorderaF CoreaA CorteseG CostantinoS CottoneP CrocianiF D'andreaMc DanniG De LucaD De PascalisF De RobertisN De StefanoG Di BattistaM Di NapoliM FalciniF FaustoMt FerròC FlorioM FortunatoC FrittelliS GalganiP GalloM GattoP GazzolaC GedaA GiordanoF GranellaMg GrassoLme GrimaldiD ImperialeL Lo RussoFo LogulloA LugaresiG LusG MaccarroneD MaimoneS MalagùR MarconiP MaritatoL MassacesiM MazzoniG MeucciM MirabellaS MontepietraD NasuelliW NeriG OreficeS ParodiL PasqualiB PassarellaF PattiM PeressonF PerlaI PesciC PiantadosiMl PirasNr PizioC PozzilliA ProttiM PugliattiR QuatraleM RagnoM RagnoM RezzonicoG RibizziM RivaM RonzoniMg RossoM RottoliM RovarisG SalemiM SalvettiM SantangeloG SantangeloG SantuccioG SantuccioP SarchielliE ScarpiniGp SechiS SeveriL SinisiP SolaD SpitaleriT TassinariG TedeschiS ToniettiV Torri ClericiR TotaroS TraccisM TrojanoM TurlaA UccelliM UlivelliP ValentinoM ValerianiS VenturiM VianelloM. Zaffaronisubject
Register (sociolinguistics)AdultMaleKnowledge managementDatabases FactualEpidemiologymedia_common.quotation_subjectDisease epidemiologyEpidemiology; Multiple sclerosis; Quality of care; RegisterLongitudinal StudieDermatologyNOCohort StudiesMultiple sclerosisDatabases03 medical and health sciences0302 clinical medicineMultiple SclerosiHumansQuality (business)Longitudinal Studies030212 general & internal medicineRegistriesEpidemiology Multiple sclerosis Quality of care Register Adult Cohort Studies Data Collection Databases Factual Female; Humans Italy; Longitudinal Studies Male Multiple Sclerosis RegistriesQuality of careFactualmedia_commonData collectionbusiness.industryData CollectionQuality of careCorrectionEpidemiology; Multiple sclerosis; Quality of care; Register; Adult; Cohort Studies; Data Collection; Databases Factual; Female; Humans; Italy; Longitudinal Studies; Male; Multiple Sclerosis; RegistriesGeneral MedicineRegisterItalyRegister dataPsychiatry and Mental HealthObservational studyOriginal ArticleSettore MED/26 - NeurologiaFemaleBusinessNeurology (clinical)Cohort Studie030217 neurology & neurosurgeryEpidemiology; Multiple sclerosis; Quality of care; Register; 2708; Neurology (clinical); Psychiatry and Mental Health2708Humandescription
The past decade has seen extraordinary increase in worldwide availability of and access to several large multiple sclerosis (MS) databases and registries. MS registries represent powerful tools to provide meaningful information on the burden, natural history, and long-term safety and effectiveness of treatments. Moreover, patients, physicians, industry, and policy makers have an active interest in real-world observational studies based on register data, as they have the potential to answer the questions that are most relevant to daily treatment decision-making. In 2014, the Italian MS Foundation, in collaboration with the Italian MS clinical centers, promoted and funded the creation of the Italian MS Register, a project in continuity with the existing Italian MS Database Network set up from 2001. Main objective of the Italian MS Register is to create an organized multicenter structure to collect data of all MS patients for better defining the disease epidemiology, improving quality of care, and promoting research projects in high-priority areas. The aim of this article is to present the current framework and network of the Italian MS register, including the methodology used to improve the quality of data collection and to facilitate the exchange of data and the collaboration among national and international groups. The past decade has seen extraordinary increase in worldwide availability of and access to several large multiple sclerosis (MS) databases and registries. MS registries represent powerful tools to provide meaningful information on the burden, natural history, and long-term safety and effectiveness of treatments. Moreover, patients, physicians, industry, and policy makers have an active interest in real-world observational studies based on register data, as they have the potential to answer the questions that are most relevant to daily treatment decision-making. In 2014, the Italian MS Foundation, in collaboration with the Italian MS clinical centers, promoted and funded the creation of the Italian MS Register, a project in continuity with the existing Italian MS Database Network set up from 2001. Main objective of the Italian MS Register is to create an organized multicenter structure to collect data of all MS patients for better defining the disease epidemiology, improving quality of care, and promoting research projects in high-priority areas. The aim of this article is to present the current framework and network of the Italian MS register, including the methodology used to improve the quality of data collection and to facilitate the exchange of data and the collaboration among national and international groups.
| year | journal | country | edition | language |
|---|---|---|---|---|
| 2019-01-01 |