Global assessment of characteristics of multiple sclerosis registries; A systematic review

Ezabadi, Sajjad Ghane; Sahraian, Mohammad Ali; Maroufi, Hossein; Shahrbaf, Mohammad Amin; Eskandarieh, Sharareh

doi:10.1016/j.msard.2022.103928

Cited by 11 publications

(8 citation statements)

References 45 publications

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“…Real-world observational studies in MS, based on large clinical datasets collected in everyday practice through disease registers, offer numerous benefits for the scientific community and pwMS. Real-world data can address unanswered research questions and face and resolve the multi-faceted criticisms emerging from daily clinical practice [9,26,27].…”

Section: Discussionmentioning

confidence: 99%

“…In order to gain efficient results to transfer into clinical practice, promoters, stakeholders and clinicians are aware that data need to be collected in a standardized way, through a common protocol, avoiding selection bias. Likewise, close assessment of the quality of data collected is important in order to extract meaningful findings [3,9].…”

Section: Discussionmentioning

confidence: 99%

“…Real-world data obtained from the study of large cohorts of patients and from MS registers play an essential role, in order to outline the optimal therapeutic path. However, the legitimization of these findings must be based on accurate and standardized data collection, which calls for constant improvement and control [3,8,9]. A large number of MS registers have been established around the world in recent years, parallel to increasingly improved ability to collect, analyse and share huge amounts of data [10][11][12][13][14][15][16].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2023

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2023

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“…All rights of participants and researchers were respected and the Helsinki rules related to research on human samples were observed. 18 …”

Section: Methodsmentioning

confidence: 99%

Epidemiological parameters of multiple sclerosis in Chaharmahal and Bakhtiari Province, Iran

Omrani

Bayati

Sahraian

et al. 2023

CJN

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Background: Multiple sclerosis (MS) is a neurological disease with a high burden and disability. There are reports of various medications’ side effects on patients with MS. The aim of the study is to determine the characteristics and medicine usage distribution among patients with MS in Chaharmahal and Bakhtiari Province in Iran. Methods: This registry-based cross-sectional study was performed among MS cases in Chaharmahal and Bakhtiari Province. The epidemiological data were collected from the nationwide MS registry of Iran (NMSRI) from 2019 to 2022. The information collected included age, sex, family history, type of MS, age at MS onset and diagnosis, MS symptoms, physical condition, and history of medication use. All tests were performed at a significance level of 0.05 using SPSS software. Results: A total of 416 patients included in this study. Among them, 325 individuals (78%) were women with mean ± standard deviation (SD) of age of 37.35 ± 8.51 years. No significant difference was observed between men and women in terms of age, type of MS disease, family history of MS, and physical condition (P > 0.05). The results showed that the Expanded Disability Status Scale (EDSS) score in female patients (1.41) was different from the EDSS score in male patients (1.77) (P < 0.05). Most of the patients often used interferon beta (IFN-β). Conclusion: The results provided new insight into the epidemiology and medicine patterns of patients with MS in Chaharmahal and Bakhtiari Province. The epidemiological situation of MS in this province is similar to other parts of Iran. Planning according to national programs is suggested for the management and control of MS.

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“…Multiple sclerosis (MS) is a chronic neuroinflammatory, neurodegenerative disease which is seen in almost 36 per 100,000 population worldwide [1] . MS is characterized by a progressive disability in affected individuals related to high relapse rate, and impressing the general health related quality of life [2] .…”

Section: Introductionmentioning

confidence: 99%

The first study of real-world efficacy and safety of Natalizumab (Tysabri®) in Iran

Shahrbaf,

Samimi,

Karimi

et al. 2024

Trends Immunother.

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Objectives: Natalizumab is an injectable DMT (disease-modifying therapy) which used for RRMS (relapsing-remitting multiple sclerosis) since 2006. The drug has been available in Iran since 2014. Introduction: This study was aimed to evaluate the real-world effectiveness of Natalizumab in a referral center in Tehran, Iran. This study is the first real world analysis of efficacy and safety of Natalizumab in our country. Methods: In this retrospective study, patients with RRMS were investigated in a high-volume center in Tehran from 2019 to 2021. MS (Multiple Sclerosis) patients under treatment with Natalizumab who have received at least 3 infusions of the drug and had completed follow-up data, have been evaluated for safety and efficacy of Natalizumab. Results: 100 patients were included in the final analysis. The mean follow-up time was 20 months (6–33 months). The median EDSS (Expanded Disability Status Scale) score of patients reached to 2 from 2.5 after the treatment course (P < 0.0001). The annualized relapse rate (ARR) decreased from 0.81 (95% CI: 0.73–0.87) to 0.023 (95% CI 0.009–0.061). The median JCV (John Cunningham virus) index remained unchanged before treatment 0.85 (IQR: 0.21–2.41) compare to after the treatment 0.85 (IQR: 0.21–2.31). The number of patients with active brain and cervical MRI (Magnetic Resonance Imaging) lesions decreased significantly (P = 0.001). NEDA-3 (No evidence of disease activity) was improved from 9% to 87% after the treatment with Natalizumab. No serious adverse events except than one progressive multifocal encephalopathy (PML) case have been found. The main reasons of switching from Natalizumab to the other DMDs (Disease Modifying Drugs) were positive JC index, starting phase, noncompliance, pregnancy, MRI activity and seroconversion after starting the drug. Conclusion: Natalizumab is a safe and effective choice in RRMS patients for reducing relapse rate, disability score, active MRI lesion, and improving the NEDA (No evidence of disease activity).

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Global assessment of characteristics of multiple sclerosis registries; A systematic review

Cited by 11 publications

References 45 publications

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

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

Epidemiological parameters of multiple sclerosis in Chaharmahal and Bakhtiari Province, Iran

The first study of real-world efficacy and safety of Natalizumab (Tysabri®) in Iran

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