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Showing 2 results for Registry

Marjan Ghazi Saeedi, Masoumeh Akhlaghi Kalahroodi, Sharareh Rostam Niakan Kalhori, Elaheh Omidvari Abarghuei,
Volume 12, Issue 5 (1-2019)
Abstract

Background and Aim: Arthritis Rheumatoid is a progressive Chronic disease requiring constant care, and it is important to consult a physician for change in treatment, to see the progress of treatment, and to control the side effects of the drug. One of the information systems used to record information of diseases is the registry or registry system of the disease, which is a database that contains specific information about those who are suffering from a specific illness. Also it is an ideal tool for clinical study. The first step to design a registry is to identify the information needs of the system.
Materials and Methods: In this study, 40 randomly selected rheumatologists were entered. The data collection tool was a researcher-made questionnaire including general information, clinical involvement, clinical information, laboratory, imaging, hospitalization and death information; its validity was confirmed by experts and its reliability was estimated by test-retest.
Results: After reviewing the average scores, the importance of general information, clinical involvement, clinical information, laboratory, radiology, hospitalization and death information were obtained: 92.9%, 84.8%, 86.2%, 81.2%, 97.04%, 87.2% and 81.2%, respectively.
Conclusion: Based on the goals that registries follow, they record different data. Identification of information needs through the involvement of physicians as the experts of this field affects the effectiveness and efficiency of the system. The result of this study is the identification of information needs for designing a registration system for patients with Rheumatoid Arthritis. This information is presented in seven categories.

Abbas Sheikhtaheri, Elaheh Jamshidi, Ali Mohammadi, Vahid Feyzollahi,
Volume 19, Issue 5 (12-2025)
Abstract

Background and Aim: Knee ligament rupture is a common knee injury, especially among athletes. Considering the importance of treatment quality in the affected population, there is a crucial need for the collection of high-quality, standardized national-level data. This can be achieved by establishing a Minimum Data Set (MDS). The present study aimed to design a Minimum Data Set for the Knee Ligament Rupture Reconstruction Registry System in Athletes.
Materials and Methods: This applied research was conducted in 2024 using a quantitative method (descriptive-comparative and Delphi technique) across three phases. In the first phase, using a descriptive-comparative approach, the required data elements from the national registry systems of selected countries (Norway, Sweden, Denmark, UK) were extracted and analyzed in comparative tables. In the second phase, the data elements currently recorded for patients undergoing knee ligament rupture reconstruction surgery in Iran were identified using a descriptive data collection form. In the third phase, based on the findings from the first two phases, a preliminary MDS was designed as a questionnaire. Its validity was then assessed over two rounds using the Delphi method by a panel of experts (24 in the first round, 18 in the second). Finally, items that achieved a consensus of 75% or higher were included in the final MDS.
Results: In the review conducted on the registry systems of selected countries, including Norway, Sweden, Denmark, and England, the data elements recorded in these systems were first extracted. Subsequently, in the first phase of the study, the extracted data elements were categorized into two main categories: Administrative and clinical. The findings of this phase were obtained through their comparison in comparative tables. The findings of the second phase of the study consisted of data elements extracted from the medical records of patients who had undergone knee ligament rupture reconstruction surgery in Iran. In the third phase of the study, the final minimum data set for patients undergoing knee ligament rupture reconstruction surgery was developed based on the findings of the first and second phases of the study as well as expert opinions. This data set comprised 78 data elements organized into two sections: administrative (9 data elements) and clinical (69 data elements). In the administrative section, data classes were categorized into demographic, socioeconomic, and visit-related groups. In the clinical section, data classes were categorized into diagnostic, anthropometric, surgical, follow-up, and outcome groups.
Conclusion: The Minimum Data Set for knee ligament rupture reconstruction surgery can play a significant role in collecting high-quality data, evaluating and managing treatment quality and outcomes, and informing planning and policymaking in this field by ensuring the collection of integrated and high-quality data.


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