Developing A Minimum Data Set for A Rheumatoid Arthritis Registry in Iran

Using Minimum Data Set (MDS) is the first step in creating and developing a health care information system; it includes standard and key data elements to capture and manage patient care.

This study aimed to develop an MDS in order for using it for designing registry of patients with rheumatoid arthritis in Iran.

This study was conducted at two stages in 2018. In stage one, qualitative method and semi-structured interview were used to identify the registry data elements of patients with rheumatoid arthritis. Collected data was analysed using content analysis method. In stage two, using Delphi method, the developed data set was revised and validated by 15 rheumatologists. Descriptive statistics using SPSS software was used to analyse the data in Delphi.

The final MDS included 22 data elements, which were divided into two major categories of management data (including demographic data, and admission and discharge) and clinical data (including patient examination, treatment plans, and medication prescribed by physician).

Minimum data set is one of the standard data collection tools playing an important role in health care data management. This study presented a MDS as a platform for creating a rheumatoid arthritis registry system in Iran recommended by rheumatologists.