The Italian multiple sclerosis register

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

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

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

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.MethodsThe 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.ResultsThe 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.ConclusionsData 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

Acetic acid disturbs rice germination and post-germination under controlled conditions mimicking green mulching in flooded paddy

Cover crop use in organic rice cropping systems efficiently manages the two most limiting factors in organic agriculture - weed competition and nutrient availability. Nonetheless, cover crop biomasses on soil surfaces under the anaerobic conditions in flooded rice systems produce organic acids (mainly acetic acid) that cause early phytotoxicity to rice seedling coleoptile and roots. This study evaluated the dose-response of acetic acid on germination rates and post-germination growth traits (coleoptile, first leaf, and roots). Under controlled conditions, the seeds of three rice varieties (Sant’Andrea, Salvo, and Selenio) were immersed in acetic acid concentrations (0, 9, 18, 36, 54, and 72 ppm) for eight days. Germination results suggest that acetic acid likely scarred var. Salvo, based on a 15% faster germination rate compared to untreated controls. Across all varieties, increased acetic acid concentrations never slowed germination. During post-germination growth stages, root phytotoxicity was always more evident than shoot phytotoxicity, although the responses varied among the varieties. Root length damage appeared first at acetic acid concentrations of 36 ppm in var. Sant’Andrea and Selenio, and at 54 ppm in var. Salvo. Root length measurements provided explicit and speedy information on varietal tolerance to acetic acid and, consequently to cover crop fermentation and suggested that direct observation of root damage in paddy fields is valuable for prompt water management decisions, such as flooding interruption. Further development of this method may lead to more complete varietal screening and identification of related genetic traits responsible for tolerance