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However, the validity and reliability of data from registers may be limited by missing data, selection bias or data quality not adequately evaluated or checked.<\/jats:p>\n                <jats:p>This study reports the analysis of the consistency and completeness of the data in the Italian Multiple Sclerosis and Related Disorders Register<jats:italic>.<\/jats:italic><\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>The Register collects, through a standardized Web-based Application, unique patients.<\/jats:p>\n                <jats:p>Data are exported bimonthly and evaluated to assess the updating and completeness, and to check the quality and consistency. Eight clinical indicators are evaluated.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>The Register counts 77,628 patients registered by 126 centres. The number of centres has increased over time, as their capacity to collect patients.<\/jats:p>\n                <jats:p>The percentages of updated patients (with at least one visit in the last 24\u00a0months) have increased from 33% (enrolment period 2000\u20132015) to 60% (enrolment period 2016\u20132022). In the cohort of patients registered\u00a0after 2016, there were\u2009\u2265\u200975% updated patients in 30% of the small centres (33), in 9% of the medium centres (11), and in all the large centres (2).<\/jats:p>\n                <jats:p>Clinical indicators show significant improvement for the active patients, expanded disability status scale every 6\u00a0months or once every 12\u00a0months, visits every 6\u00a0months, first visit within 1\u00a0year and MRI every 12\u00a0months.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>Data from disease registers provide guidance for evidence-based health policies and research, so methods and strategies ensuring their quality and reliability are crucial and have several potential applications.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s10072-023-06876-9","type":"journal-article","created":{"date-parts":[[2023,6,14]],"date-time":"2023-06-14T02:01:50Z","timestamp":1686708110000},"page":"4001-4011","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":12,"title":["Data monitoring roadmap. 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Hoffman-La Roche, Almirall, Janssen, BMS SQUIBB, BMS; CG received compensation for participation in advisory board\/data safety monitoring board and\/or speaking activities from Almirall, Jansen, Bayer, Biogen, Celgene, Merck, Mylan, Novartis, Roche, Sanofi and TEVA; FP received compensation for consulting fee, grants, travel, participation in advisory board\/data safety monitoring board and\/or speaking activities from FISM, RELOAD Onlus, Roche Biogen, Almirall, Bayer, Bristol Myers and Squibb, Merk, Novartis, Roche, Janssen, Sanofi, Alexion; MPu received compensation for consulting fee, grants, travel, participation in advisory board\/data safety monitoring board and\/or speaking activities from Janssen Cilag, Merck Serono, Sanofi Genzyme, Novartis, Biogen, Bristol Myers and Squibb; MU received compensation for travel, participation in advisory board\/data safety monitoring board and\/or speaking activities from Roche, Biogen, Sanofi Genzyme, Merck Serono; MT received compensation for grants, travel, participation in advisory board\/data safety monitoring board and\/or speaking activities from Biogen, Merck, Novartis, Roche, Janssen, Sanofi, Alexion, BMS.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"The study, conducted according to the World Medical Association Declaration of Helsinki, was approved by the Ethics Committee of the coordinating centre (University of Bari, reference numbers 0055587 and 0052885), and by the local ethics committees of all centres. The protocol for this analysis was discussed and approved by the Scientific Committee of the I-MS&RD Register. Each person enrolled signed written informed consent. In some centres where data were collected before the I-MS&RD Register was set up, retrospective information was included without informed consent when the patient was not traceable because of death, transfer or other reasons, in line with local laws and regulations. This analysis does not contain any individual information.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"All the authors meet the journal\u2019s criteria for authorship and have read and approved the article.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}]}}