Medical Journal of the Islamic Republic Of Iran

en An Early View of Iran Primary Sjogren Syndrome Registry (Guilan Province Pilot Phase), an Emerging Effort for a National Registry Establishment Rheumatology Rheumatology Original Research Original Research Background: The Sjogren syndrome (SS) is the least well-known rheumatic condition. We aim to gradually resolve it by standardizing the process of SS care in our country, at first for primary Sjogren syndrome cases, through developing Iran Primary Sjogren Syndrome Registry (IRAPSS) which will create a representative and comparable data bank.    Methods: Guilan Primary Sjogren Syndrome Registry (GUIRAPSS) is a pilot phase of IRAPSS, which is a prospective cohort. Care of its patients is done based on EULAR Sjögren's syndrome disease activity index (ESSDAI) recommendations. Other IRAPSS outcome measurements are EULAR Sjogren syndrome patient reported index (ESSPRI) and Sjögren's syndrome disease damage index (SSDDI) for detecting disease damage.    Results: Female-male ratio was 17.5. The age at expert diagnosis was 46.97 ± 11.93 years old. The most common comorbidity was hypothyroidism (28.38%), followed by musculoskeletal conditions (27.02%). 28.38% had fatigue. Active disease existed based on the clinical form of ESSDAI and ESSDAI, 31.8% and 81.8% respectively. The most involved organs during disease activity based on ESSDAI were biological 68.12% following pulmonary (12.16%) and respiratory (10.81%) system. Hydroxychloroquine was the most prescribed drug (72.97%), followed by prednisolone (28.38%).    Conclusion: Disease registries provide an ideal opportunity for gathering standardized and comparable data which provides needed items for creating, updating, or adapting pSS classification criteria/diagnosis, outcome measurements and or treatment guidelines.   Primary Sjogren, Sjogren, Registry 971 984 http://mjiri.iums.ac.ir/browse.php?a_code=A-10-8723-1&slc_lang=en&sid=1 Asghar Hajiabbasi asghar.hadjiabbasi@gmail.com 200319475328460089713 200319475328460089713 No Guilan Rheumatology Research Center, Department of Rheumatology, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran Ahmad Reza Jamshidi arjamshida@gmail.com 200319475328460089714 200319475328460089714 No Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran Ali Monfared drmonfared2009@gmail.com 200319475328460089715 200319475328460089715 No Regenerative Medicine, Organ Procurement and Transplantation multi-disciplinary Center, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran Mohammad Javad Mohmmadi eye.rcgilan@gmail.com 200319475328460089716 200319475328460089716 No Eye Research Center, Department of Eye, Amir-Almomenin Hospital, Guilan University of Medical Sciences, Rasht, Iran Azita Tangestani Nejad aznejad@yahoo.com 200319475328460089717 200319475328460089717 No 5. Inflammatory Lung Diseases Research Center, Department of Internal Medicine, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran Shervan Shoaee Shervanoo@yahoo.com 200319475328460089718 200319475328460089718 No Elderly Health Research Center, Endocrinology and Metabolism Population Sciences Institute, Tehran University of Medical Sciences, Tehran, Iran Hoorvash Ebrahimi hoorvashebrahimi@yahoo.com 200319475328460089719 200319475328460089719 No Guilan Rheumatology Research Center, Department of Rheumatology, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran Fatemeh Nejatifar dr.f.nejatifar@gmail.com 200319475328460089720 200319475328460089720 No Hematology and Medical Oncology Department, Guilan University of Medical Sciences, Rasht, Iran Irandokht Shenavar Masooleh shenavar44@yahoo.com 200319475328460089721 200319475328460089721 No Guilan Rheumatology Research Center, Department of Rheumatology, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran Habib Zayeni zayeni_h@yahoo.com 200319475328460089722 200319475328460089722 No 1. Guilan Rheumatology Research Center, Department of Rheumatology, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran Banafsheh Ghavidel Parsa bghavidelparsa@gmail.com 200319475328460089723 200319475328460089723 No Guilan Rheumatology Research Center, Department of Rheumatology, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran Hassan Behboudi Behboudi_dr@yahoo.com 200319475328460089724 200319475328460089724 No Eye Research Center, Department of Eye, Amir-Almomenin Hospital, Guilan University of Medical Sciences, Rasht, Iran Mahsa Mahedipour Dalivand mahsamehdipour@yahoo.com 200319475328460089725 200319475328460089725 No Guilan Rheumatology Research Center, Department of Rheumatology, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran Pooneh Ghavidel Parsa grrc@gums.ac.ir 200319475328460089726 200319475328460089726 Yes Guilan Rheumatology Research Center, Department of Rheumatology, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran