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

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 n

SUBMITTER: Mosconi P 

PROVIDER: S-EPMC10264214 | biostudies-literature | 2023 Nov

REPOSITORIES: biostudies-literature