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Establishing a minimum data set for Parkinson's (PMDS) in Iran
Ahmad Chitsaz1, Sima Ajami2, Maryam Varnaseri3
1Department of Neurology, School of Medicine, Isfahan University of Medical Sciences, Hezarjerib Avenue, Isfahan, Iran.
Background:
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.
Material And Methods:
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.
Results:
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.
Conclusion:
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.
Insights
A national Parkinson's Minimum Data Set (PMDS) was established in Iran to standardize data collection for Parkinson's disease patients. This comprehensive PMDS includes 223 data elements across administrative and clinical categories.
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.
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