Designing the Data Elements for Patient Registry System for Membranous Nephropathy in Isfahan Province.

BACKGROUND: Membranous nephropathy is one of the most common glomerulonephritis types in adults. Various treatment methods are applied for this disease. Establishing a patient registry system and analyzing the collected data can help identify the strengths and limitations of current treatment approaches. This enables the adoption of more effective therapies, preventing disease progression to end-stage renal disease. Furthermore, consolidating patient information into a unified electronic system has diverse applications. METHODS: This action research study utilized patient medical records (including hospital files, clinic cards, test reports, and prescriptions) as the primary data sources. In cases of incomplete information, data were collected from patients or their close relatives. Patient information was gathered using a checklist. Data analysis employed tests as necessary, depending on the objectives. RESULTS: The final version of the checklist consisted of three sections: demographic variables (age, gender, education level, residence, date of birth, occupation, and contact information), laboratory tests, pharmaceutical variables, and treatment protocols used for patients. This information was systematically collected for all patients. CONCLUSIONS: Establishing a registry for membranous nephropathy in Isfahan is critical in improving treatment and control of this disease within the Iranian population. Comparing this data with similar studies from other regions can reveal epidemiological and clinical differences, which can be leveraged to enhance diagnostic and therapeutic strategies.