[Multiple sclerosis in central Hungary: experiences and future possibilities of developing a local database]

Area of Science:

• Neurology
• Health Informatics
• Database Management

Background:

• Patient data in routine care are fragmented across digital and paper systems, complicating patient follow-up.
• Multiple sclerosis (MS) is a leading neurological disorder in young adults, significantly impacting health and socioeconomic status.

Purpose of the Study:

• To develop a user-friendly, detailed local database for efficient data access, registration, and analysis in multiple sclerosis patient care.
• To model a modern database system based on practical experiences in building a clinical registry.

Main Methods:

• Initial establishment of a local registry using Microsoft Excel.
• Subsequent data transfer to the iMed system for comprehensive data management.
• Utilized separate database pages for demographics, follow-up visits, relapses, comorbidities, neuroimaging, cerebrospinal fluid (CSF) analysis, evoked responses, and treatments.

Main Results:

• The database successfully aggregated data for 316 multiple sclerosis patients.
• High rates of diagnostic procedures were observed: 96% underwent MRI, and 45% had CSF examinations.
• Key clinical insights include a 9% rate of primary progressive MS at onset and 82% of patients receiving disease-modifying treatments.

Conclusions:

• Traditional manual data entry and PDF exports are inefficient and outdated for patient data management.
• Continuous, automated data entry is crucial for developing effective local, disease-specific databases for clinical and research use.
• Future registries should adopt uniform documentation standards and enable automatic data transfer between digital systems, potentially using a healthcare data lake model.