Despite the positive progress in the healthcare situation in our country, a comprehensive system for disease registry based on international standards has not been launched in our country until recently. Healthcare administrators need reliable tools such as registration systems to properly distribute resources. These registration systems provide information about epidemiological data of diseases, their geographical distribution, and the quality of available health services. Currently, there are national rheumatism databases in many countries in Europe, Canada, the United States, and Japan.
Our online software for registration of rheumatic diseases (http://rheumatry.com/) through collecting demographic, clinical, radiological, laboratory, and therapeutic data helps researchers to understand the causes, prediction of disease improvement, and treatment outcomes. Furthermore, we can use this system to illustrate epidemiological aspects of diseases, quality of life in patients, socioeconomic effects of diseases, disease cost burden and disabilities in patients. Regarding the prevalence and importance of rheumatic diseases and the lack of a disease registry system throughout the country, professors of Rheumatology Research Center (RRC) decided to launch an online disease registry system for rheumatic diseases. According to the Memorandum of Understanding between the Ministry of Health and the RRC on rheumatic disease registration, we are committed to launching an autoimmune rheumatic disease registration system in our country. This program through collaboration with the Ministry of Health was approved in December 2016.
The aim of this registration system is to identify and understand the etiopathogenesis of rheumatic diseases in Iranian society. This system also provides a situation for better research in future studies.
With the help of this registry system, we are able to evaluate the effectiveness of the cost burden of these rheumatic diseases and the socioeconomic effects of these diseases on our society. These data can be used in decision making for a special intervention or proposing a solution in the control and management of these diseases.
The web-based disease registry system is now being launched in the field of rheumatic diseases (rheumatoid arthritis, systemic sclerosis, systemic lupus erythematosus and ankylosing spondylitis), and the most recent programming technique has been applied.
In addition to RRC, this program is now being implemented in other universities and centers in our country. Furthermore, this program also has the ability to devolve to foreign subscribers and this is in line with the centers’ mission.
Seyedeh Tahereh Faezi, Mahdieh Hosseini Almodarresi, Pedram Paragomi, Farhad Gharibdoost, Maasoumeh Akhlaghi, Ahamadreza Jamshidi, Nahid Shafaie, Mahmood Akbarian. Clinical picture of lupus nephritis in patients with systemic lupus erythematosus (SLE): Results of a large survey. Rheumatology Research Journal. 2017;2(2)51-59. doi: 10.22631/RR.2017.69997.1017.
Seyedeh Tahereh FAEZI, Mahdieh HOSSEINI ALMODARRESI, Mahmood AKBARIAN, Farhad GHARIBDOOST, Masoumeh AKHLAGHI, Ahamadreza JAMSHIDI, Farhad SHAHRAM, Abdolhadi NADJI, Nahid SHAFAIE, Maryam AKHLAGHKHAH, Pedram PARAGOMI and Fereydoun DAVATCHI. Clinical and immunological pattern of systemic lupus erythematosus in men in a cohort of 2355 patients. International Journal of Rheumatic Diseases. 2014;17(4)394–399. doi: 10.1111/1756-185X.12268.
Akbarian M, Faezi ST, Gharibdoost F, Shahram F, Nadji A, Jamshidi AR, Akhlaghi M, Shafaie N, Akhlaghkhah M, Davatchi F.. Systemic lupus erythematosus in Iran: a study of 2280 patients over 33 years.. International Journal of Rheumatic Disease . 2010;13(4)374-9. doi: 10.1111/j.1756-185X.2010.01547.x.