Minimum data set for cystic fibrosis registry: a case study in iran

Area of Science:

• Medical Informatics
• Public Health
• Epidemiology

Background:

• National registries for cystic fibrosis (CF) are vital for patient care and research.
• A Minimum Data Set (MDS) standardizes data collection for registries.
• This study aimed to define an MDS for CF registries in northwest Iran.

Purpose of the Study:

• To determine a minimum data set for establishing a cystic fibrosis registry in northwest Iran.
• To identify essential data elements for comprehensive CF patient data collection.
• To lay the groundwork for a national CF registry system in Iran.

Main Methods:

• Reviewed data items from selected international CF registries.
• Convened a panel of experts (epidemiologists, pediatricians, CF specialists) to score data elements.
• Included data elements deemed important by over 50% of experts.
• Assessed data availability using medical records of 144 hospitalized patients.

Main Results:

• Identified six data categories: demographics, administrative, survival, diagnostics, genetics/clinical, and therapeutics.
• 32 data elements across these categories were approved as the MDS.
• High data availability (100%) for administrative, survival, and medication data.
• Partial availability for sweat and genetic tests; limited data on antenatal screening and specific diagnostic tests.

Conclusions:

• This work represents a foundational step towards establishing a CF registry in Iran.
• The defined MDS can guide the development of electronic registries and patient records.
• Standardized data collection will improve integrated patient care for individuals with CF.