Skip to main content

Advertisement

SpringerLink
Log in

Description of the registry of patients with ankylosing spondylitis in Turkey: TRASD-IP

  • Original Article
  • Published:
Rheumatology International Aims and scope Submit manuscript

Abstract

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 ± 10.7 years). Mean disease duration was 12.1 ± 8.5 years, and mean time from initial symptom to diagnosis was 5 ± 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 ≥4. 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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Silman A, Hochberg MC (2001) Ankylosing spondylitis and spondyloarthropathies. In: Silman A, Hochberg MC (eds) Epidemiology of the rheumatic diseases. Oxford University Press, New York, pp 100–111

    Google Scholar 

  2. Onen F, Akar S, Birlik M, Sari I, Khan MA, Gurler O et al (2008) Prevalence of ankylosing spondylitis and related spondyloarthritides in an urban area of Izmir, Turkey. J Rheumatol 35:305–309

    PubMed  Google Scholar 

  3. Braun J, Listing J, Sieper J (2005) Reply to the editor. Arthritis Rheum 52:4049–4050

    Article  Google Scholar 

  4. van Vollenhoven RF, Askling J (2005) Rheumatoid arthritis registries in Sweden. Clin Exp Rheumatol 23(5 Suppl 39):S195–S200

    PubMed  Google Scholar 

  5. Collantes E, Zarco P, Muñoz E, Juanola X, Mulero J, Fernández-Sueiro JL et al (2007) Disease pattern of spondyloarthropathies in Spain: description of the first national registry (REGISPONSER) extended report. Rheumatology (Oxford) 46:1309–1315. doi:10.1093/rheumatology/kem084

    Article  CAS  Google Scholar 

  6. Strömbeck B, Jacobsson LTH, Bremander A, Englund M, Heide A, Turkiewicz A et al (2009) Patients with ankylosing spondylitis have increased sick leave—a registry-based case-controlled study over 7 yrs. 48(3):289–292

  7. Zochling J, van der Heijde D, Burgos-Vargas R, Collantes E, Davis JC Jr, Dijkmans B et al (2006) ASAS/EULAR recommendations for the management of ankylosing spondylitis. Ann Rheum Dis 65:442–452. doi:10.1136/ard.2005.041137

    Article  PubMed  CAS  Google Scholar 

  8. Zochling J, Braun J, van der Heijde D (2006) Assessments in ankylosing spondylitis. Best Pract Res Clin Rheumatol 20:521–537. doi:10.1016/j.berh.2006.03.011

    Article  PubMed  Google Scholar 

  9. Zochling J, Sieper J, van der Heijde D, Braun J, Assessment in Ankylosing Spondylitis International Working Group (2008) Development of a core set of domains for data collection in cohorts of patients with ankylosing spondylitis receiving anti-tumor necrosis factor-alpha therapy. J Rheumatol 35:1079–1082

    PubMed  Google Scholar 

  10. Akkoc Y, Karatepe AG, Akar S, Kirazli Y, Akkoc N (2005) A Turkish version of the Bath Ankylosing Spondylitis Disease Activity Index: reliability and validity. Rheumatol Int 25:280–284. doi:10.1007/s00296-003-0432-y

    Article  PubMed  Google Scholar 

  11. Karatepe AG, Akkoc Y, Akar S, Kirazli Y, Akkoc N (2005) The Turkish versions of the Bath Ankylosing Spondylitis and Dougados Functional Indices: reliability and validity. Rheumatol Int 25:612–618. doi:10.1007/s00296-004-0481-x

    Article  PubMed  Google Scholar 

  12. Heuft-Dorenbosch L, Spoorenberg A, van Tubergen A, Landewé R, van ver Tempel H, Mielants H et al (2003) Assessment of enthesitis in ankylosing spondylitis. Ann Rheum Dis 62:127–132. doi:10.1136/ard.62.2.127

    Article  PubMed  CAS  Google Scholar 

  13. Sieper J, Rudwaleit M, Baraliakos X, Brandt J, Braun J, Burgos-Vargas R et al (2009) The Assessment of SpondyloArthritis international Society (ASAS) handbook: a guide to assess spondyloarthritis. Ann Rheum Dis 68:ii1–ii44. doi:10.1136/ard.2008.104018

    Article  PubMed  Google Scholar 

  14. Duruöz T, Doward L, Cerrahoğlu L, Turan Y (2008) Translation and validation of the Turkish version of the ankylosing spondylitis quality of life (ASQoL) Questionnaire. Ann Rheum Dis 67:623 [Supplement (EULAR Congress Abstracts)]

    Google Scholar 

  15. Koçyiğit H, Aydemir Ö, Ölmez N, Memiş A (1999) SF-36’nın Türkçe için güvenilirliliği ve geçerliliği. Ege Fizik Tedavi ve Rehabilitasyon Dergisi 12:102–106

    Google Scholar 

  16. Van der Linden S, Valkenburg HA, Cats A (1984) Evaluation of diagnostic criteria for ankylosing spondylitis. A proposal for modification of the New York criteria. Arthritis Rheum 27:361–368

    Article  PubMed  Google Scholar 

  17. Baek HJ, Shin KC, Lee YJ, Kang SW, Lee EB, Yoo CD et al (2004) Clinical features of adult-onset ankylosing spondylitis in Korean patients: patients with peripheral joint disease (PJD) have less severe spinal disease course than those without PJD. Rheumatology (Oxford) 43:1526–1531. doi:10.1093/rheumatology/keh373

    Article  CAS  Google Scholar 

  18. Zhao LK, Liao ZT, Li CH, Li TW, Wu J, Lin Q et al (2007) Evaluation of quality of life using ASQoL questionnaire in patients with ankylosing spondylitis in a Chinese population. Rheumatol Int 27:605–611. doi:10.1007/s00296-006-0267-4

    Article  PubMed  CAS  Google Scholar 

  19. Ozgocmen S, Ardicoglu O, Kamanli A, Kaya A, Durmus B, Yildirim K et al (2009) Pattern of disease onset, diagnostic delay, and clinical features in juvenile onset and adult onset ankylosing spondylitis. J Rheumatol 36:2830–2833. doi:10.3899/jrheum.090435

    Article  PubMed  Google Scholar 

  20. Stone M, Warren RW, Bruckel J, Cooper D, Cortinovis D, Inman RD (2005) Juvenile-onset ankylosing spondylitis is associated with worse functional outcomes than adult-onset ankylosing spondylitis. Arthritis Rheum 53:445–451. doi:10.1002/art.21174

    Article  PubMed  Google Scholar 

  21. Ozgül A, Peker F, Taskaynatan MA, Tan AK, Dinçer K, Kalyon TA (2006) Effect of ankylosing spondylitis on health-related quality of life and different aspects of social life in young patients. Clin Rheumatol 25:168–174. doi:10.1007/s10067-005-1150-5

    Article  PubMed  Google Scholar 

  22. Ward MM (2002) Predictors of the progression of functional disability in patients with ankylosing spondylitis. J Rheumatol 29:1420–1425

    PubMed  Google Scholar 

  23. Bodur H, Ataman S, Akbulut L, Evcik D, Kavuncu V, Kaya T et al (2008) Characteristics and medical management of patients with rheumatoid arthritis and ankylosing spondylitis. Clin Rheumatol 27(9):1119–1125

    Article  PubMed  CAS  Google Scholar 

  24. Lee W, Reveille JD, Davis JC Jr, Learch TJ, Ward MM, Weisman MH (2007) Are there gender differences in severity of ankylosing spondylitis? Results from the PSOAS cohort. Ann Rheum Dis 66:633–638. doi:10.1136/ard.2006.060293

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The authors express their gratitude to all members of TRASD AS Study group for their cooperation and to Wyeth/Pfizer Company for the sponsorship. The authors declare that they have no conflict of interest.

Author information

Authors and Affiliations

  1. Ankara Numune Training & Research Hospital, Mürsel Uluç M, 937 S, No: 35/17, 06450, Ankara, Turkey

    Hatice Bodur

  2. Ankara University School of Medicine, Ankara, Turkey

    Şebnem Ataman

  3. İstanbul Physical Medicine & Rehabilitation Training & Research Hospital, Istanbul, Turkey

    Derya Soy Buğdaycı

  4. Vakıf Gureba Hospital, Istanbul, Turkey

    Aylin Rezvani

  5. Dicle University School of Medicine, Dicle, Turkey

    Kemal Nas

  6. Trakya University School of Medicine, Edirne, Turkey

    Kaan Uzunca

  7. Hacettepe University School of Medicine, Ankara, Turkey

    Emel Emlakçıoğlu

  8. İzmir Training & Research Hospital, Izmir, Turkey

    Altınay Göksel Karatepe

  9. İnönü University School of Medicine, Malatya, Turkey

    Bekir Durmuş

  10. Mersin University School of Medicine, Mersin, Turkey

    Melek Sezgin

  11. Ankara Training & Research Hospital, Ankara, Turkey

    Figen Ayhan

  12. Harran University School of Medicine, Sanliurfa, Turkey

    Pelin Yazgan

  13. Celal Bayar University School of Medicine, Manisa, Turkey

    Tuncay Duruöz

  14. Süleyman Demirel University School of Medicine, Isparta, Turkey

    Mahmut Yener

  15. İzmir Atatürk Training & Research Hospital, Izmir, Turkey

    Alev Gürgan & Asuman Memiş

  16. Erciyes University School of Medicine, Kayseri, Turkey

    Mehmet Kırnap

  17. GATA Haydarpaşa Training & Research Hospital, Istanbul, Turkey

    Engin Çakar

  18. Uludağ University School of Medicine, Bursa, Turkey

    Lale Altan & Konçuy Sivrioğlu

  19. Şişli Etfal Training & Research Hospital, Istanbul, Turkey

    Raikan Soydemir

  20. Karadeniz Technical University School of Medicine, Trabzon, Turkey

    Erhan Çapkın

  21. 100. Yıl University School of Medicine, Van, Turkey

    İbrahim Tekeoğlu

  22. Kırıkkale University School of Medicine, Kirikkale, Turkey

    Gülümser Aydın

  23. Gazi University School of Medicine, Ankara, Turkey

    Zafer Günendi

  24. Ankara Training & Research Hospital, Ankara, Turkey

    Barış Nacır

  25. Selçuk University School of Medicine, Konya, Turkey

    Ali Sallı

  26. Ege University School of Medicine, Izmir, Turkey

    Cihat Öztürk

  27. Adnan Menderes University School of Medicine, Aydin, Turkey

    Yasemin Turan

  28. Çukurova University School of Medicine, Adana, Turkey

    Erkan Kozanoğlu

Authors
  1. Hatice Bodur
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Şebnem Ataman
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Derya Soy Buğdaycı
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Aylin Rezvani
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Kemal Nas
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Kaan Uzunca
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Emel Emlakçıoğlu
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Altınay Göksel Karatepe
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Bekir Durmuş
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Melek Sezgin
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Figen Ayhan
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Pelin Yazgan
    View author publications

    You can also search for this author in PubMed Google Scholar

  13. Tuncay Duruöz
    View author publications

    You can also search for this author in PubMed Google Scholar

  14. Mahmut Yener
    View author publications

    You can also search for this author in PubMed Google Scholar

  15. Alev Gürgan
    View author publications

    You can also search for this author in PubMed Google Scholar

  16. Mehmet Kırnap
    View author publications

    You can also search for this author in PubMed Google Scholar

  17. Engin Çakar
    View author publications

    You can also search for this author in PubMed Google Scholar

  18. Lale Altan
    View author publications

    You can also search for this author in PubMed Google Scholar

  19. Raikan Soydemir
    View author publications

    You can also search for this author in PubMed Google Scholar

  20. Erhan Çapkın
    View author publications

    You can also search for this author in PubMed Google Scholar

  21. İbrahim Tekeoğlu
    View author publications

    You can also search for this author in PubMed Google Scholar

  22. Gülümser Aydın
    View author publications

    You can also search for this author in PubMed Google Scholar

  23. Zafer Günendi
    View author publications

    You can also search for this author in PubMed Google Scholar

  24. Barış Nacır
    View author publications

    You can also search for this author in PubMed Google Scholar

  25. Ali Sallı
    View author publications

    You can also search for this author in PubMed Google Scholar

  26. Cihat Öztürk
    View author publications

    You can also search for this author in PubMed Google Scholar

  27. Asuman Memiş
    View author publications

    You can also search for this author in PubMed Google Scholar

  28. Yasemin Turan
    View author publications

    You can also search for this author in PubMed Google Scholar

  29. Erkan Kozanoğlu
    View author publications

    You can also search for this author in PubMed Google Scholar

  30. Konçuy Sivrioğlu
    View author publications

    You can also search for this author in PubMed Google Scholar

Consortia

Türkiye Romatizma Araştırma ve Savaş Derneği [TRASD] (Turkish League Against Rheumatism) Ankylosing Spondylitis [AS] Study Group

Corresponding author

Correspondence to Hatice Bodur.

Additional information

The list of the other authors from the TRASD AS Study Group is given in the “Appendix”.

Appendix

Appendix

The following is the list of the other authors from the TRASD AS Study Group: Ajda Bal, Dışkapı Yıldırım Beyazıt Training & Research Hospital; Ahmet Özgül Gülhane Military Medical Academy; Kazım Şenel Atatürk University School of Medicine; Filiz M. Sertpoyraz, İzmir Tepecik Training & Research Hospital; Kazım Çapacı, Ege University School of Medicine; Hakan Gündüz, Marmara University School of Medicine; Hasan Toktaş, Afyon Kocatepe University School of Medicine; Sibel Ü. Delialioğlu, Öznur A. Öken, Ankara Physical Medicine and Rehabilitation Training & Research Hospital; Sami Hizmetli Cumhuriyet University School of Medicine; Saime Ay Ufuk University School of Medicine.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Bodur, H., Ataman, Ş., Buğdaycı, D.S. et al. Description of the registry of patients with ankylosing spondylitis in Turkey: TRASD-IP. Rheumatol Int 32, 169–176 (2012). https://doi.org/10.1007/s00296-010-1599-7

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00296-010-1599-7

Keywords

Search

Navigation