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

The minimum data set (MDS) is one of the important steps in the development of health care information systems. According to the Ministry of Health in Iran, a central and national registry along with Parkinson’s MDS (PMDS) has not yet existed. So, this research was conducted to establish a PMDS in Iran.

This study was a descriptive–comparative method, which was done in 2019–2021 in four phases: (1) determining data elements related to Parkinson’s disease in Iran and selected countries; (2) extracting and categorizing the data elements; (3) making a PMDS draft; (4) evaluating a draft by Delphi technique. The research population was the MDS in Australia, Canada, the United States of America, and Iran. After extracting the data elements of Parkinson’s disease from various resources, the primary draft PMDS was developed. Then, the research group divided it into two categories (administrative and clinical). After that, it was sent to 50 healthcare professionals for validation by the Delphi method.

Following the results of the two rounds of Delphi technique, Finally, PMDS was established including a total of 223 data elements in two categories: administrative and clinical with 72 and 151, respectively. Every category included 10 and 14 subcategories.

The first and the most important step for standardization of data collection nationally is creating MDS. Due to the necessity of the existence of PMDS, a complete list of PMDS was established for collecting data on Parkinson’s patients.