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Data monitoring roadmap. The experience of the Italian Multiple Sclerosis and Related Disorders Register.

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Title: Data monitoring roadmap. The experience of the Italian Multiple Sclerosis and Related Disorders Register.
Authors: Mosconi, Paola (AUTHOR), Guerra, Tommaso (AUTHOR), Paletta, Pasquale (AUTHOR), D'Ettorre, Antonio (AUTHOR), Ponzio, Michela (AUTHOR), Battaglia, Mario Alberto (AUTHOR), Amato, Maria Pia (AUTHOR), Bergamaschi, Roberto (AUTHOR), Capobianco, Marco (AUTHOR), Comi, Giancarlo (AUTHOR), Gasperini, Claudio (AUTHOR), Patti, Francesco (AUTHOR), Pugliatti, Maura (AUTHOR), Ulivelli, Monica (AUTHOR), Trojano, Maria (AUTHOR), Lepore, Vito (AUTHOR), Aguglia, U. (AUTHOR), Amato, MP. (AUTHOR), Ancona, AL. (AUTHOR), Ardito, B. (AUTHOR)
Source: Neurological Sciences. Nov2023, Vol. 44 Issue 11, p4001-4011. 11p.
Subjects: Multiple sclerosis, Quality control, Reporting of diseases, Web-based user interfaces, Missing data (Statistics)
Abstract: Introduction: Over the years, disease registers have been increasingly considered a source of reliable and valuable population studies. 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. This study reports the analysis of the consistency and completeness of the data in the Italian Multiple Sclerosis and Related Disorders Register. Methods: The Register collects, through a standardized Web-based Application, unique patients. Data are exported bimonthly and evaluated to assess the updating and completeness, and to check the quality and consistency. Eight clinical indicators are evaluated. Results: The Register counts 77,628 patients registered by 126 centres. The number of centres has increased over time, as their capacity to collect patients. The percentages of updated patients (with at least one visit in the last 24 months) have increased from 33% (enrolment period 2000–2015) to 60% (enrolment period 2016–2022). In the cohort of patients registered after 2016, there were ≥ 75% updated patients in 30% of the small centres (33), in 9% of the medium centres (11), and in all the large centres (2). Clinical indicators show significant improvement for the active patients, expanded disability status scale every 6 months or once every 12 months, visits every 6 months, first visit within 1 year and MRI every 12 months. Conclusions: 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. [ABSTRACT FROM AUTHOR]
Copyright of Neurological Sciences is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Data monitoring roadmap. The experience of the Italian Multiple Sclerosis and Related Disorders Register.
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  Data: <searchLink fieldCode="AR" term="%22Mosconi%2C+Paola%22">Mosconi, Paola</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Guerra%2C+Tommaso%22">Guerra, Tommaso</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Paletta%2C+Pasquale%22">Paletta, Pasquale</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22D'Ettorre%2C+Antonio%22">D'Ettorre, Antonio</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Ponzio%2C+Michela%22">Ponzio, Michela</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Battaglia%2C+Mario+Alberto%22">Battaglia, Mario Alberto</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Amato%2C+Maria+Pia%22">Amato, Maria Pia</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Bergamaschi%2C+Roberto%22">Bergamaschi, Roberto</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Capobianco%2C+Marco%22">Capobianco, Marco</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Comi%2C+Giancarlo%22">Comi, Giancarlo</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gasperini%2C+Claudio%22">Gasperini, Claudio</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Patti%2C+Francesco%22">Patti, Francesco</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Pugliatti%2C+Maura%22">Pugliatti, Maura</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Ulivelli%2C+Monica%22">Ulivelli, Monica</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Trojano%2C+Maria%22">Trojano, Maria</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Lepore%2C+Vito%22">Lepore, Vito</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Aguglia%2C+U%2E%22">Aguglia, U.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Amato%2C+MP%2E%22">Amato, MP.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Ancona%2C+AL%2E%22">Ancona, AL.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Ardito%2C+B%2E%22">Ardito, B.</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Neurological+Sciences%22">Neurological Sciences</searchLink>. Nov2023, Vol. 44 Issue 11, p4001-4011. 11p.
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  Data: <searchLink fieldCode="DE" term="%22Multiple+sclerosis%22">Multiple sclerosis</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+control%22">Quality control</searchLink><br /><searchLink fieldCode="DE" term="%22Reporting+of+diseases%22">Reporting of diseases</searchLink><br /><searchLink fieldCode="DE" term="%22Web-based+user+interfaces%22">Web-based user interfaces</searchLink><br /><searchLink fieldCode="DE" term="%22Missing+data+%28Statistics%29%22">Missing data (Statistics)</searchLink>
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  Data: Introduction: Over the years, disease registers have been increasingly considered a source of reliable and valuable population studies. 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. This study reports the analysis of the consistency and completeness of the data in the Italian Multiple Sclerosis and Related Disorders Register. Methods: The Register collects, through a standardized Web-based Application, unique patients. Data are exported bimonthly and evaluated to assess the updating and completeness, and to check the quality and consistency. Eight clinical indicators are evaluated. Results: The Register counts 77,628 patients registered by 126 centres. The number of centres has increased over time, as their capacity to collect patients. The percentages of updated patients (with at least one visit in the last 24 months) have increased from 33% (enrolment period 2000–2015) to 60% (enrolment period 2016–2022). In the cohort of patients registered after 2016, there were ≥ 75% updated patients in 30% of the small centres (33), in 9% of the medium centres (11), and in all the large centres (2). Clinical indicators show significant improvement for the active patients, expanded disability status scale every 6 months or once every 12 months, visits every 6 months, first visit within 1 year and MRI every 12 months. Conclusions: 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. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Neurological Sciences is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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