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    Description of the registry of patients with ankylosing spondylitis in Turkey: TRASD-IP
    (Springer Heidelberg, 2012) Bodur, Hatice; Ataman, Sebnem; Bugdayci, Derya Soy; Rezvani, Aylin; Nas, Kemal; Uzunca, Kaan; Emlakcioglu, Emel
    A web-based application patient follow-up program was developed to create a registry of patients with ankylosing spondylitis (AS) by the Turkiye Romatizma Arastirma Savas Dernegi (TRASD) AS Study Group. This study describes the methodological background and patient characteristics. The patient follow-up program is a web-based questionnaire, which contains sections on socio-demographic data, anamnesis, personal and family history, systemic and musculoskeletal examination, laboratory and imaging data and treatment. Between October 1, 2007 and February 28, 2009, 1,381 patients from 41 centers were included in the registry (1,038 males [75.2%]; mean age 39.5 +/- A 10.7 years). Mean disease duration was 12.1 +/- A 8.5 years, and mean time from initial symptom to diagnosis was 5 +/- A 6.8 years (median 2 years). HLA-B27 positivity was detected in 73.7% of 262 patients tested. Manifestations of extraarticular involvement were anterior uveitis (13.2%), psoriasis and other skin and mucous membrane lesions (6%) and inflammatory bowel disease (3.8%). The prevalence of peripheral arthritis was 11.2%. In 51.7% of patients, the Bath AS Disease Activity Index was a parts per thousand yen4. But since our patients consisted of the ones with more severe disease who referred to the tertiary centers and needed a regular follow-up, they may not represent the general AS population. Disease-modifying anti-rheumatic drugs were being used by 41.9% of patients, with 16.4% using anti-TNF agents. TRASD-IP (Izlem Programi: Follow-up program) is the first AS registry in Turkey. Such databases are very useful and provide a basis for data collection from large numbers of subjects. TRASD-IP gives information on the clinical and demographic profiles of patients, and the efficacy and safety of anti-TNF drugs, examines the impact on quality of life, and provides real-life data that may be used in cost-effectiveness analyses.
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    Quality of life and related variables in patients with ankylosing spondylitis
    (Springer, 2011) Bodur, Hatice; Ataman, Sebnem; Rezvani, Aylin; Bugdayci, Derya Soy; Cevik, Remzi; Birtane, Murat; Akinci, Aysen
    To evaluate quality of life (QoL) and related variables in patients with ankylosing spondylitis (AS), a chronic inflammatory disease of the spine. Nine-hundred and sixty-two patients with AS from the Turkish League Against Rheumatism AS Registry, who fulfilled the modified New York criteria, were enrolled. The patients were evaluated using the Assessment of SpondyloArthritis International Society core outcome domains including Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), fatigue (BASDAI-question 1), pain (last week/spine/due to AS), Bath Ankylosing Spondylitis Functional Index (BASFI), Bath Ankylosing Spondylitis Metrology Index (BASMI), Bath Ankylosing Spondylitis Radiology Index (BASRI), Maastricht Ankylosing Spondylitis Enthesitis Score (MASES) and two QoL questionnaires (the disease-specific ASQoL and generic the Short Form-36 [SF-36]). The mean ASQoL score was 7.1 +/- A 5.7. SF-36 subscales of general health, physical role and bodily pain had the poorest scores. ASQoL was strongly correlated with disease duration, BASDAI, fatigue, BASFI, BASMI, BASRI, MASES, pain and SF-36 subscales (P < 0.001). SF-36 subscales were also strongly correlated with BASDAI and BASFI. Advanced educational status and regular exercise habits positively affected QoL, while smoking negatively affected QoL. In patients with AS, the most significant variables associated with QoL were BASDAI, BASFI, fatigue and pain. ASQoL was noted to be a short, rapid and simple patient-reported outcome (PRO) instrument and strongly correlated with SF-36 subscales.
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    Turkish League Against Rheumatism (TLAR) recommendations for the pharmacological management of rheumatoid arthritis: 2018 update under guidance of current recommendations
    (Official Journal of the Turkish League Against Rheumatism (TLAR), 2018) Ataman, Şebnem; Sunar, İsmihan; Yılmaz, Gürkan; Bodur, Hatice; Nas, Kemal; Ayhan, Fikriye Figen; Akgül, Özgür; Akıncı, Ayşen; Altay, Zuhal; Birtane, Murat; Çapkın, Erhan; Çevik, Remzi; Çimen, Yeşim Garip; Duruöz, Mehmet Tuncay; Elhan, Atilla Halil; Gürer, Gülcan; Kaçar, Cahit; Kamanlı, Ayhan; Kaptanoğlu, Ece; Kaya, Taciser; Kocabaş, Hilal; Kuru, Ömer; Melikoğlu, Meltem Alkan; Özel, Sumru; Rezvani, Aylin; Sezer, İlhan; Yurdakul, Fatma Gül
    Objectives: This study aims to report the assessment of the Turkish League Against Rheumatism (TLAR) expert panel on the compliance and adaptation of the European League Against Rheumatism (EULAR) 2016 recommendations for the management of rheumatoid arthritis (RA) in Turkey. Patients and methods: The EULAR 2016 recommendations for the treatment of RA were voted by 27 specialists experienced in this field with regard to participation rate for each recommendation and significance of items. Afterwards, each recommendation was brought forward for discussion and any alteration gaining ≥70% approval was accepted. Also, Turkish version of each item was rearranged. Last version of the recommendations was then revoted to determine the level of agreement. Levels of agreement of the two voting rounds were compared with Wilcoxon signed-rank test. In case of significant difference, the item with higher level of agreement was accepted. In case of no difference, the changed item was selected. Results: Four overarching principles and 12 recommendations were assessed among which three overarching principles and one recommendation were changed. The changed overarching principles emphasized the importance of physical medicine and rehabilitation specialists as well as rheumatologists for the care of RA patients in Turkey. An alteration was made in the eighth recommendation on treatment of active RA patients with unfavorable prognostic indicators after failure of three conventional disease modifying anti-rheumatic drugs. Remaining principles were accepted as the same although some alterations were suggested but could not find adequate support to reach significance. Conclusion: Expert opinion of the TLAR for the treatment of RA was composed for practices in Turkish rheumatology and/or physical medicine and rehabilitation clinics.