National systemic lupus erythematosus prospective cohort in Saudi Arabia: A study protocol

Systemic Lupus erythematosus (SLE) is a chronic multisystem, multifactorial inflammatory autoimmune disease. The SLE patients have 3 times increased risk of mortality based on international data with ethnicity playing an important impact on patients' morbidity and mortality. Descriptive studies...

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Veröffentlicht in:Medicine (Baltimore) 2021-07, Vol.100 (30), p.e26704-e26704
Hauptverfasser: Almaghlouth, Ibrahim A., Hassen, Lena M., Alahmari, Hana S., Bedaiwi, Asma, Albarrak, Rana, Daghestani, Maha, Alqurtas, Eman, Alkhalaf, Abdulaziz, Bedaiwi, Mohammed, Omair, Mohammed, Almogairen, Sultan, Alarfaj, Hussein, Alarfaj, Abdulrahman
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container_title Medicine (Baltimore)
container_volume 100
creator Almaghlouth, Ibrahim A.
Hassen, Lena M.
Alahmari, Hana S.
Bedaiwi, Asma
Albarrak, Rana
Daghestani, Maha
Alqurtas, Eman
Alkhalaf, Abdulaziz
Bedaiwi, Mohammed
Omair, Mohammed
Almogairen, Sultan
Alarfaj, Hussein
Alarfaj, Abdulrahman
description Systemic Lupus erythematosus (SLE) is a chronic multisystem, multifactorial inflammatory autoimmune disease. The SLE patients have 3 times increased risk of mortality based on international data with ethnicity playing an important impact on patients' morbidity and mortality. Descriptive studies from Saudi Arabia showed variation in clinical features from one region to another. Moreover, reliable inference from these studies is limited by study methodology and lack of translational data using biological samples to understand clinical phenotypes of Saudi SLE patients.The aim of this report is to describe the prospective study protocol of the National Systemic Lupus Erythematosus Cohort in Saudi Arabia. The purpose of this cohort study is multifold: first, to examine clinical characteristics and molecular phenotypes of Saudi SLE patients in relation to local environment and practices/lifestyles; second, to assess long-term outcomes of SLE in Saudi population and factors that influence favorable outcomes; third, to compare the effectiveness of various treatment regimens in Saudi SLE population.This study is a longitudinal prospective cohort study of adult, Saudi SLE patients using open cohort study design. Primary outcomes include disease-related outcomes (activity, improvement, and organ damage) and patient-reported outcomes (quality of life). Secondary outcomes include physiological and molecular modifications associated with changes in disease activity states.Results and analysis are in on-going study.This study provides a source of reliable data for clinical and translational research. This will allow us to have a holistic approach to SLE pathogenesis especially in Saudi population and may take us a step further toward much more personalized medicine.This protocol has been registered in NIH ClinicalTrial.gov (ClinicalTrial.gov identifier: NCT04604990) on October 27, 2020.
doi_str_mv 10.1097/MD.0000000000026704
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The SLE patients have 3 times increased risk of mortality based on international data with ethnicity playing an important impact on patients' morbidity and mortality. Descriptive studies from Saudi Arabia showed variation in clinical features from one region to another. Moreover, reliable inference from these studies is limited by study methodology and lack of translational data using biological samples to understand clinical phenotypes of Saudi SLE patients.The aim of this report is to describe the prospective study protocol of the National Systemic Lupus Erythematosus Cohort in Saudi Arabia. The purpose of this cohort study is multifold: first, to examine clinical characteristics and molecular phenotypes of Saudi SLE patients in relation to local environment and practices/lifestyles; second, to assess long-term outcomes of SLE in Saudi population and factors that influence favorable outcomes; third, to compare the effectiveness of various treatment regimens in Saudi SLE population.This study is a longitudinal prospective cohort study of adult, Saudi SLE patients using open cohort study design. Primary outcomes include disease-related outcomes (activity, improvement, and organ damage) and patient-reported outcomes (quality of life). Secondary outcomes include physiological and molecular modifications associated with changes in disease activity states.Results and analysis are in on-going study.This study provides a source of reliable data for clinical and translational research. 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source MEDLINE; DOAJ Directory of Open Access Journals; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals; Wolters Kluwer Open Health; IngentaConnect Free/Open Access Journals; PubMed Central; Alma/SFX Local Collection
subjects Clinical Protocols
Cohort Studies
Humans
Lupus Erythematosus, Systemic - drug therapy
Lupus Erythematosus, Systemic - epidemiology
Lupus Erythematosus, Systemic - psychology
Prospective Studies
Saudi Arabia - epidemiology
Study Protocol
Treatment Adherence and Compliance - psychology
title National systemic lupus erythematosus prospective cohort in Saudi Arabia: A study protocol
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