Establishing a minimum data set for Parkinson's (PMDS) in Iran.

Area of Science:

• Health Informatics
• Neurology
• Data Management

Background:

• The development of health care information systems relies on Minimum Data Sets (MDS).
• Iran currently lacks a centralized national registry and a specific Parkinson's Minimum Data Set (PMDS).

Purpose of the Study:

• To establish a national Parkinson's Minimum Data Set (PMDS) for Iran.
• To standardize the collection of data for Parkinson's disease patients within the country.

Main Methods:

• A descriptive-comparative study was conducted between 2019-2021.
• Data elements were identified from Iran and selected countries, then categorized.
• A draft PMDS was developed and validated by 50 healthcare professionals using the Delphi technique.

Main Results:

• The established PMDS comprises 223 data elements.
• These elements are divided into administrative (72 elements, 10 subcategories) and clinical (151 elements, 14 subcategories) categories.
• The Delphi technique confirmed the validity of the finalized PMDS.

Conclusions:

• Establishing an MDS is crucial for national data collection standardization.
• The newly created PMDS is essential for systematically collecting data on Parkinson's patients in Iran.