Volume 10, Issue 3 (7-2021)                   WJPS 2021, 10(3): 99-103 | Back to browse issues page


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Farokhforghani S, Fatemi M J, Ghanooni P, Asadpour F, Araghi S, Nouri A. Epidermolysis Bullosa Registry Data in Iran. WJPS. 2021; 10 (3) :99-103
URL: http://wjps.ir/article-1-818-en.html
1- Burn Research Center, Iran University of Medical Sciences, Tehran, Iran.
Abstract:   (319 Views)
ABSTRACT
BACKGROUND
In many countries, there is no registry system to record data for Epidermolysis Bullosa patients. However, the first steps for establishing a registry system have been taken in Iran. Therefore, we decided to publish it for the first time.
METHODS
This was a prospective cross-sectional study. Data was obtained from 538 patients consecutively enrolled in the Iranian Epidermolysis Bullosa Registry, using a detailed instrument created by burn research center of Iran University of Medical Sciences, Tehran, Iran from Jan 2017 to Sep 2017. Patients’ information such as age, gender, address, educational status, parents’ family relationship and pathology result were recorded. Then a physician examined patients focusing on gastrointestinal system, teeth, ophthalmologic disorders, psychological problems and contracture of the upper and lower limbs and any other complaint. Data entered SPSS ver.19 and analyzed using ANOVA and LSD tests.
RESULTS
Overall, 538 EB patients were registered in Iran (6.72 patient in 100.000 person) with an approximately equal ratio between males and females. Among 103 patients whose disease type was determined by a pathologist, 78 patients (75.7%) had dystrophic type, 13 (12.6%) junctional, 9 (8.7%) simplex and 3 (2.9%) kindler type. The most common complaint of patients was dysphagia followed by tooth damage.
CONCLUSION
We stablished a data registry for EB patients for the first time in Iran. The frequency of EB in Iran is less than many other countries. However, data completion is to be done to include all patients as possible.
Full-Text [PDF 184 kb]   (159 Downloads)    
Type of Study: case report | Subject: Special
Received: 2021/07/31 | Accepted: 2021/07/6 | Published: 2021/10/23

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