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 Italian multiple sclerosis register / 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.; Acquistapace D.; Aguglia U.; Annunziata P.; Ardito B.; Avolio C.; Balgera R.; Bandini F.; Banfi P.; Barone P.; Bellantonio P.; Bertolotto A.; Bertora P.; Bombardi R.; Bosco Zimatore G.; Bossio R.B.; Bramanti P.; Brescia Morra V.; Brioschi A.M.; Bruzzone M.; Buccafusca M.; Busillo V.; Caneve G.; Caniatti L.M.; Capone L.; Capone F.; Cappellani A.; Cargnelutti D.; Cavaletti G.; Cavalla P.; Celani M.G.; Centonze D.; Chiveri L.; Clerici R.; Clerico M.; Cocco E.; Comi C.; Coniglio M.G.; Cordera S.; Corea F.; Cortese A.; Costantino G.; Cottone S.; Crociani P.; D'Andrea F.; Danni M.C.; De Luca G.; de Pascalis D.; De Robertis F.; De Stefano N.; Di Battista G.; Di Napoli M.; Falcini M.; Fausto F.; Ferro M.T.; Florio C.; Fortunato M.; Frittelli C.; Galgani S.; Gallo P.; Gatto M.; Gazzola P.; Geda C.; Giordano A.; Granella F.; Grasso M.G.; Grimaldi L.M.E.; Imperiale D.; Lo Russo L.; Logullo F.O.; Lugaresi A.; Lus G.; Maccarrone G.; Maimone D.; Malagu S.; Marconi R.; Maritato P.; Massacesi L.; Mazzoni M.; Meucci G.; Mirabella M.; Montepietra S.; Nasuelli D.; Neri W.; Orefice G.; Parodi S.; Pasquali L.; Passarella B.; Peresson M.; Perla F.; Pesci I.; Piantadosi C.; Piras M.L.; Pizio N.R.; Pozzilli C.; Protti A.; Pugliatti M.; Quatrale R.; Ragno M.; Rezzonico M.; Ribizzi G.; Riva M.; Ronzoni M.; Rosso M.G.; Rottoli M.; Rovaris M.; Salemi G.; Salvetti M.; Santangelo M.; Santangelo G.; Santuccio G.; Sarchielli P.; Scarpini E.; Sechi G.P.; Severi S.; Sinisi L.; Sola P.; Spitaleri D.; Tassinari T.; Tedeschi G.; Tonietti S.; Torri Clerici V.; Totaro R.; Traccis S.; Turla M.; Uccelli A.; Ulivelli M.; Valentino P.; Valeriani M.; Venturi S.; Vianello M.; Zaffaroni M.. - In: NEUROLOGICAL SCIENCES. - ISSN 1590-1874. - ELETTRONICO. - 40:1(2019), pp. 155-165. [10.1007/s10072-018-3610-0]
The Italian multiple sclerosis register
Lugaresi A.Writing – Review & Editing
;
2019
Abstract
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.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
