FIRST REPORT OF THE ELECTRONIC REGISTRY OF PATIENTS WITH BETA THALASSEMIA MAJOR IN MAZANDARAN PROVINCE, IRAN

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KOSARYAN MEHRNOUSH; KARAMI HOSSEIN; ALIPOUR ABBAS; AKBARZADEH ROZITA; ALIASGHARIAN AILY; MASOUDINEJHAD MAEDE; DARVISHI KHEZRI HADI

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Journal: JOURNAL OF MAZANDARAN UNIVERSITY OF MEDICAL SCIENCES Year:2017 | Volume:27 | Issue:150 Page(s): 54-65

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Title

FIRST REPORT OF THE ELECTRONIC REGISTRY OF PATIENTS WITH BETA THALASSEMIA MAJOR IN MAZANDARAN PROVINCE, IRAN

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Keywords

ELECTRONIC REGISTRYQ1

BETA THALASSEMIA MAJORQ3

MAZANDARAN PROVINCEQ2

Abstract

Background and purpose: The ELECTRONIC REGISTRY of patients with BETA THALASSEMIA MAJOR was developed in Thalassemia Research Center affiliated with Mazandaran University of Medical Sciences in order to provide an accurate database for researchers and health planners. This study reports the condition of patients registered in MAZANDARAN PROVINCE till summer 2016. Materials and methods: In this descriptive study, the following information was recorded in the registry system: epidemiologic data, clinical examination data, complications, routine laboratory test results, medications, new cases, and death. Descriptive statistics were used to summarize the data. Results: Until the summer 2016, 1053 patients including 500 (47.5%) males and 553 (52.5%) females were registered in 14 hospitals. These were half of the number of patients receiving care by the aforementioned University. Among the patients, 920 (87.4%) were transfusion dependent. Single patients included 54.2% (n= 571). The level of formal education was beyond high school in 29.8% (n= 314). Three hundred and fifty (33.2%) patients were employed. Splenectomy was done in 606 (58%) patients. Diabetes mellitus, hypoparathyroidism, and hypothyroidism were diagnosed in at least 12% (n= 120), 14.3% (n= 145), and 11% (n= 112), respectively. Cardiomyopathy was observed in 113 (11.2%) cases. The most common iron chelators medication was desferrioxamine, which was used alone (50.4%) or in combination with deferiprone (24.3%).Conclusion: Current research showed that in spite of incompleteness of records at the ELECTRONIC REGISTRY of patients with BETA THALASSEMIA MAJOR, a comprehensive electronic system could enhance the level of care provided for involved patients.

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APA: Copy

KOSARYAN, MEHRNOUSH, KARAMI, HOSSEIN, ALIPOUR, ABBAS, AKBARZADEH, ROZITA, ALIASGHARIAN, AILY, MASOUDINEJHAD, MAEDE, & DARVISHI KHEZRI, HADI. (2017). FIRST REPORT OF THE ELECTRONIC REGISTRY OF PATIENTS WITH BETA THALASSEMIA MAJOR IN MAZANDARAN PROVINCE, IRAN. JOURNAL OF MAZANDARAN UNIVERSITY OF MEDICAL SCIENCES, 27(150), 54-65. SID. https://sid.ir/paper/45949/en

Vancouver: Copy

KOSARYAN MEHRNOUSH, KARAMI HOSSEIN, ALIPOUR ABBAS, AKBARZADEH ROZITA, ALIASGHARIAN AILY, MASOUDINEJHAD MAEDE, DARVISHI KHEZRI HADI. FIRST REPORT OF THE ELECTRONIC REGISTRY OF PATIENTS WITH BETA THALASSEMIA MAJOR IN MAZANDARAN PROVINCE, IRAN. JOURNAL OF MAZANDARAN UNIVERSITY OF MEDICAL SCIENCES[Internet]. 2017;27(150):54-65. Available from: https://sid.ir/paper/45949/en

IEEE: Copy

MEHRNOUSH KOSARYAN, HOSSEIN KARAMI, ABBAS ALIPOUR, ROZITA AKBARZADEH, AILY ALIASGHARIAN, MAEDE MASOUDINEJHAD, and HADI DARVISHI KHEZRI, “FIRST REPORT OF THE ELECTRONIC REGISTRY OF PATIENTS WITH BETA THALASSEMIA MAJOR IN MAZANDARAN PROVINCE, IRAN,” JOURNAL OF MAZANDARAN UNIVERSITY OF MEDICAL SCIENCES, vol. 27, no. 150, pp. 54–65, 2017, [Online]. Available: https://sid.ir/paper/45949/en

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