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An Early View of Iran Primary Sjogren Syndrome Registry (Guilan Province Pilot Phase), an Emerging Effort for a National Registry Establishment Publisher



Hajiabbasi A1 ; Jamshidi A2 ; Monfared A3 ; Mohammadi MJ4 ; Nejad AT5 ; Shoaee S6, 7, 8 ; Ebrahimi H1 ; Nejatifar F9 ; Masooleh IS1 ; Zayeni H1 ; Ghavidelparsa B1 ; Behboodi H4 ; Dalivand MM1 ; Parsa PG1
Authors
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Authors Affiliations
  1. 1. Guilan Rheumatology Research Center, Department of Rheumatology, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran
  2. 2. Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran
  3. 3. Regenerative Medicine, Organ Procurement and Transplantation multi-disciplinary Center, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran
  4. 4. Eye Research Center, Department of Eye, Amir-Almomenin Hospital, Guilan University of Medical Sciences, Rasht, Iran
  5. 5. Inflammatory Lung Diseases Research Center, Department of Internal Medicine, Razi Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran
  6. 6. Elderly Health Research Center, Endocrinology and Metabolism Population Sciences Institute, Tehran University of Medical Sciences, Tehran, Iran
  7. 7. Non-communicable Diseases Research Center, Endocrinology and Metabolism Research Institute, Tehran University of Medical Sciences, Tehran, Iran
  8. 8. Kerman Oral and Dental Diseases Research Center, Kerman University of Medical Sciences, Kerman, Iran
  9. 9. Hematology and Medical Oncology Department, Guilan University of Medical Sciences, Rasht, Iran

Source: Medical Journal of the Islamic Republic of Iran Published:2024


Abstract

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 Sjogren’s syndrome disease activity index (ESSDAI) recommendations. Other IRAPSS outcome measurements are EULAR Sjogren syndrome patient reported index (ESSPRI) and Sjogren’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. © Iran University of Medical Sciences
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