THE REGISTRY OF SYSTEMIC LUPUS ERYTHEMATOSUS PATIENTS, A EURASIAN COHORT (RENAISSANCE)

The article presents the data of international registries and cohort studies of systemic lupus erythematosus (SLE). It justifies the purpose and objectives of the international registry of SLE patients, a Eurasian cohort (RENAISSANCE), which was launched in 2012 and amalgamated the leading rheumatology centers of the Russian Federation (V.A. Nasonova Research Institute of Rheumatology; Department of Rheumatology,  Pacific State Medical University), Kazakhstan (Department of Rheumatology,  S.D. Asfendiyarov Kazakh National  Medical University), and Kyrgyzstan (Academician M. Mirrakhimov  National  Center for Cardiology and Therapy), which mainly concentrate patients with the acute course of this disease. The first data of the registry are given.

1. Mok CC, Mak A, Chu WP, et al. Long-term survival of southern Chinese patients with systemic lupus erythematosus: a prospective study of all age-groups. Medicine (Baltimore). 2005 Jul;84(4):218-24. doi: 10.1097/01.md.0000170022.44998.d1

2. Yee CS, Su L, Toescu V, et al. Birmingham SLE cohort: outcomes of a large inception cohort followed for up to 21 years. Rheumatology (Oxford). 2015 May;54(5):836-43. doi: 10.1093/rheumatology/keu412

3. Lerang K, Gilboe IM, Steinar Thelle D, Gran JT. Mortality and years of potential life loss in systemic lupus erythematosus: a population-based cohort study. Lupus. 2014 Dec;23(14):1546-52. doi: 10.1177/0961203314551083

4. Watson P, Brennan A, Birch H, et al. An integrated extrapolation of long-term outcomes in systemic lupus erythematosus: analysis and simulation of the Hopkins lupus cohort. Rheumatology (Oxford). 2015 Apr;54(4):623-32. doi: 10.1093/rheumatology/keu375

5. Albrecht K, Huscher D, Richter J, et al. Changes in referral, treatment and outcomes in patients with systemic lupus erythematosus in Germany in the 1990s and the 2000s. Lupus Sci Med. 2014;1:e000059. doi: 10.1136/lupus-2014-000059

6. Petri M, Orbai M, Alarcon G, et al. Derivation and validation of the Systemic Lupus International Collaborating Clinics Classification Criteria for systemic lupus erythematosus. Rheumatology. 2012;64(8):2677-86. doi: 10.1002/art.34473

7. Клюквина НГ. Системная красная волчанка. В кн.: Насонов ЕЛ, Насонова ВА, редакторы. Ревматология. Национальное руководство. Москва: ГЭОТАР-Медиа; 2008. С. 430-1 [Kljukvina NG. Systemic lupus erythematosus. In: Nasonov EL, Nasonova VA, editors. Revmatologiya. Natsional'noe rukovodstvo [Rheumatology. National guidelines]. Moscow: GEOTAR Media; 2008. P. 430-1].

8. Попкова ТВ, Лисицына ТА. Рекомендации по ведению больных системной красной волчанкой в клинической практике (по материалам рекомендаций Европейской антиревматической лиги – EULAR). Современная ревматология. 2011;5(1):4-12 [Popkova TV, Lisitsyna TA. Recommendations for the management of patients with systemic lupus erythematosus in clinical practice (based on the recommendations of the European Antirheumatic League – EULAR). Sovremennaya Revmatologiya = Modern Rheumatology Journal. 2011;5(1):4-12 (In Russ.)]. doi: 10.14412/1996-7012-2011-645

9. Mosca M, Tani C, Aringer M, et al. European League Against Rheumatism recommendations for monitoring patients with systemic lupus erythematosus in clinical practice and in observational studies. Ann Rheum Dis. 2010 Jul;69(7):1269-74. doi: 10.1136/ard.2009.117200

10. Guidance for Industry, Systemic Lupus Erythematosus – Developing Medical Products for Treatment. U.S. Department of Health and Human Services. Food and Drug Administration. Center for Drug Evaluation and Research (CDER). Center for Biologics Evaluation and Research (CBER). Center for Devices and Radiological Health (CDRH). June 2010.

11. Асеева ЕА, Соловьев СК, Насонов ЕЛ. Современные методы оценки активности системной красной волчанки. Научнопрактическая ревматология. 2013;51(2):186-200 [Aseeva EA, Solovyev SK, Nasonov EL. Current methods for evaluating the activity of systemic lupus erythematosus. Nauchno-Prakticheskaya Revmatologiya = Rheumatology Science and Practice. 2013;51(2):186-200 (In Russ.)]. doi: 10.14412/1995-4484-2013-648

12. Gladman DD, Goldsmith CH, Urowitz MB, et al. The Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC/ACR) damage index for systemic lupus erythematosus inter-national comparison. J Rheumatol.2000;27(2):373-6.

13. Амирджанова ВН. Оценка качества жизни больных ревматическими заболеваниями. В кн.: Насонов ЕЛ, редактор. Национальное руководство по ревматологии. Москва: ГЭОТАР-Медиа; 2007 [Amirjanova VN. Quality of life of patients with rheumatic diseases. In: Nasonov EL, editor. Natsional'noe rukovodstvo po revmatologii [National guidelines in rheumatology]. Moscow: GEOTAR Media; 2007].

14. Амирджанова ВН, Горячев ДВ, Коршунов НИ и др. Популяционные показатели качества жизни по опроснику SF-36 (результаты многоцентрового исследования качества жизни «МИРАЖ»). Научно-практическая ревматология. 2008;46(1):36-48 [Amirdjanova VN, Goryachev DV, Korshunov NI, et al. SF-36 questionnaire population quality of life indices Objective. Nauchno-Prakticheskaya Revmatologiya = Rheumatology Science and Practice. 2008;46(1):36-48 (In Russ.)]. doi: 10.14412/1995-4484-2008-852

15. Чучалин АГ, редактор. Качество жизни у больных бронхиальной астмой и хронической обструктивной болезнью легких. Москва: Атмосфера; 2004. 253 с. [Chuchalin AG, editor. Kachestvo zhizni u bol'nykh bronkhial'noy astmoy i khronicheskoy obstruktivnoy bolezn'yu legkikh [Quality of life in patients with bronchial asthma and chronic obstructive pulmonary disease]. Moscow: Atmosfera; 2004. 253 p.].

16. Койлубаева ГМ. Качество жизни больных ревматоидным артритом и некоторые фармакоэкономические аспекты заболевания: Дисс. … канд. мед. наук. Москва; 2005 [Koylubaeva GM. Kachestvo zhizni bol'nykh revmatoidnym artritom i nekotorye farmakoekonomicheskie aspekty zabolevaniya: Diss. … kand. med. nauk [The quality of life of patients with rheumatoid arthritis and some pharmacoeconomic aspects of the disease: Diss.... Cand. med. Sci.]. Moscow; 2005].

17. Насонов ЕЛ, редактор. Ревматология. Клинические рекомендации. 2-е изд. Москва: ГЭОТАР-Медиа; 2010. С. 713-25 [Nasonov EL, editor. Revmatologiya. Klinicheskie rekomendatsii [Rheumatology. Clinical guidelines]. 2nd ed. Moscow: GEOTAR Media; 2010. P. 713-25].

18. Mcelhone K, Abbott J, Shelmardine J, et al. Development and validation of a disease-specific health-related quality of life measure, the lupusqol, for adults with systemic lupus erythematosus. Arthritis Rheum. 2007;57(6):972-9. doi: 10.1002/art.22881

19. Соловьев СК, Асеева ЕА, Попкова ТВ и др. Стратегия лечения системной красной волчанки «до достижения цели» (Treat-to-Target SLE). Pекомендации международной рабочей группы и комментарии российских экспертов. Научнопрактическая ревматология. 2015;53(1):9-16 [Soloviev SK, Aseeva EA, Popkova TV, et al. Treat-to-target SLE recommendations from the international task force and russian experts’ commentaries. Nauchno-Prakticheskaya Revmatologiya =Rheumatology Science and Practice. 2015;53(1):9-16 (In Russ.)]. doi: 10.14412/1995-4484-2015-9-16

20. Асеева ЕА, Цанян МЭ, Торгашина АВ. Перспективы анти-Вклеточной терапии СКВ. Фарматека. 2014;7(280):40-4 [Aseeva EA, Tsanyan ME, Torgashina AV. Outlook anti-B-cell therapy of SLE. Farmateka. 2014;7(280):40-4 (In Russ.)].

21. Асеева ЕА, Соловьев СК, Меснянкина АА и др. Опыт применения белимумаба у больных системной красной волчанкой. Научно-практическая ревматология. 2015;53(3):329-35 [Aseeva EA, Soloviev SK, Mesnyankina AA, et al. Experience with belimumab in patients with systemic lupus erythematosus. Nauchno-Prakticheskaya Revmatologiya = Rheumatology Science and Practice. 2015;53(3):329-35 (In Russ.)]. doi: 10.14412/1995-4484-2015-329-335

22. Fernandez-Nebro A, Rua-Figueroa I, Lopez-Longo FJ, et al. Cardiovascular Events in Systemic Lupus Erythematosus. A Nationwide Study in Spain From the RELESSER Registry. Medicine (Baltimore). 2015 Jul; 94(29):e1183. doi: 10.1097/MD.0000000000001183. Pub. online 2015 Jul 24.

23. Pego-Reigosa JM, Rua-FigueroaI, Lopez-Longo FJ, et al. Analysis of disease activity and response to treatment in a large Spanish cohort of patients with systemic lupus erythematosus. Lupus. 2014;0:1-10.

24. Fangtham M, Petri M. 2013 Update: Hopkins Lupus Cohort. Curr Rheumatol Rep. 2013;15(9):360. doi: 10.1007/s11926-013-0360-0

25. Sawah S, Zhang X, Zhu B, et al. Effect of corticosteroid use by dose on the risk of developing organ damage over time in systemic lupus erythematosus – the Hopkins Lupus Cohort. Lupus Sci Med. 2015;2:e000066. doi:10.1136/lupus-2014-000066

26. Bruce IN, O'Keeffe AG, Farewell V, et al. Factors associated with damage accrual in patients with systemic lupus erythematosus: results from the Systemic Lupus International Collaborating Clinics (SLICC) Inception Cohort. Ann Rheum Dis. 2015;74:1706-13. doi: 10.1136/annrheumdis-2013-205171

27. Parker B, Urowitz MB, Gladman DD, et al. Impact of early disease factors on metabolic syndrome in systemic lupus erythematosus: data from an international inception cohort. Ann Rheum Dis. 2015;74:1530-6. doi: 10.1136/annrheumdis-2013-203933

28. Urowitz M, Gladman DD, Ibanez D, et al. Changes in quality of life in the first 5 years of disease in a multicenter cohort of patients with systemic lupus erythematosus. Arthritis Care Res (Hoboken). 2014 Sep;66(9):1374-9. doi: 10.1002/acr.22299

29. Urowitz MB, Gladman DD, Ibanez D, et al. Evolution of disease burden over five years in a multicenter inception systemic lupus erythematosus cohort. Arthritis Care Res (Hoboken). 2012 Jan;64(1):132-7. doi: 10.1002/acr.20648

30. Hanly JG, O'Keeffe AG, Su L, et al. The frequency and outcome of lupus nephritis: results from an international inception cohort study. Rheumatology (Oxford). 2016 Feb;55(2):252-62. doi: 10.1093/rheumatology/kev311

31. Li M, Zhang W, Leng X, et al. Chinese SLE Treatment and Research Group Registry: III. Association of Autoantibodies with Clinical Manifestations in Chinese Patients with Systemic Lupus Erythematosus. J Immunol Res. 2014;2014:Article ID 809389, 8 p. doi: 10.1155/2014/809389

32. Andrade C, Mendonca T, Farinha F, et al. Alveolar hemorrhage in systemic lupus erythematosus: a cohort review. Lupus. 2016 Jan;25(1):75-80. doi: 10.1177/0961203315605365. Epub 2015 Sep 18.

33. Drenkard C, Bao G, Dennis G, et al. Burden of systemic lupus erythematosus on employment and work productivity: data from a large cohort in the southeastern United States. Arthritis Care Res (Hoboken). 2014 Jun;66(6):878-87. doi: 10.1002/acr.22245

34. Pons-Estel GJ, Saurit V, Alarcon GS, et al. The impact of rural residency on the expression and outcome of systemic lupus erythematosus: data from a multiethnic Latin American cohort. Lupus. 2012;21(13):1397-404. doi: 10.1177/0961203312458465. Epub 2012 Aug 31.

35. Grö nhagen CM, Fored CM, Granath F, Nyberg F. Increased risk of cancer among 3663 patients with cutaneous lupus erythematosus: a Swedish nationwide cohort study. Br J Dermatol. 2012 May;166(5):1053-9. doi: 10.1111/j.1365-2133.2011.10773.x

36. Goncalves MJ, Sousa S, Ines LS, et al. Characterization of damage in Portuguese lupus patients: analysis of a national lupus registry. Lupus. 2015 Mar;24(3):256-62. doi: 10.1177/0961203314555172

37. Ribi C, Trendelenburg M, Gayet-Ageron A, et al. The Swiss Systemic lupus erythematosus Cohort Study (SSCS) – cross-sectional analysis of clinical characteristics and treatments across different medical disciplines in Switzerland. Swiss Med Wkly. 2014;144:w13990. doi: 10.4414/smw.2014.13990

38. Conti F, Ceccarelli F, Perricone C, et al. Mycophenolate mofetil in systemic lupus erythematosus: results from a retrospective study in a large monocentric cohort and review of the literature. Immunol Res. 2014 Dec;60(2-3):270-6. doi: 10.1007/s12026-014-8609-x

39. Teh CL, Ling GR, Aishah WS. The Sarawak lupus cohort: clinical features and disease patterns of 633 SLE patients in a single tertiary centre from East Malaysia. Rheumatol Int. 2015 Jan;35(1):153-7. doi: 10.1007/s00296-014-3057-4

40. Carli L, Tani C, Spera V, et al. Risk factors for osteoporosis and fragility fractures in patients with systemic lupus erythematosus. Lupus Sci Med. 2016;3(1): e000098. doi: 10.1136/lupus-2015-000098

41. Lin WH, Guo CY, Wang WM, et al. Incidence of progression from newly diagnosed systemic lupus erythematosus to end stage renal disease and all cause mortality: a nationwide cohort study in Taiwan. Int J Rheum Dis. 2013 Dec;16(6):747-53. doi: 10.1111/1756-185X.12208

42. Plantinga LC, Drenkard C, Pastan SO, Lim SS. Attribution of cause of end-stage renal disease among patients with systemic lupus erythematosus: the Georgia Lupus Registry. Lupus Sci Med. 2016;3:e000132. doi: 10.1136/lupus-2015-000132

43. Dall'Era M, Cisternas MG, Smilek DE, et al. Predictors of longterm renal outcome in lupus nephritis trials: lessons learned from the Euro-Lupus Nephritis cohort. Arthritis Rheum. 2015 May;67(5):1305-13. doi: 10.1002/art.39026

44. Van Vollenhoven RF, Mosca M, Bertsias G, et al. Treat-to-target in systemic lupus erythematosus: recommendations from an international task force. Ann Rheum Dis. 2014 Jun;73(6):958-67. doi: 10.1136/annrheumdis-2013-205139

45. Насонов ЕЛ, Лукина ГВ, Сигидин ЯА и др. Применение моноклональных антител к В-лимфоцитам (ритуксимаб) при ревматоидном артрите в России (предварительные результаты Российского регистра). Терапевтический архив. 2008;80(8):57-62 [Nasonov EL, Lukina GV, Sigidin YaA, et al. Application moklonalnyh antibodies to B-lymphocytes (rituximab) in patients with rheumatoid arthritis in Russia (the preliminary results of the Russian-sensitive). Terapevticheskiy Arkhiv. 2008;80(8):57-62 (In Russ.)].

46. Насонов ЕЛ, Лукина ГВ, Сигидин ЯА. Комбинированная терапия ритуксимабом и лефлуномидом при ревматоидном артрите (предварительные результаты российского регистра АРБИТР). Научно-практическая ревматология. 2011;49(1):16-20 [Nasonov EL, Lukina GV, Sigidin YA. Combination therapy for rheumatoid arthritis with rituximab and leflunomide(preliminary results of the Russian ARBITR Registry). Nauchno-Prakticheskaya Revmatologiya = Rheumatology Science and Practice. 2011;49(1):16-20 (In Russ.)]. doi: 10.14412/1995-4484-2011-862

47. Ines L, Silva C, Galindo M, et al. Classification of Systemic Lupus Erythematosus: Systemic Lupus International Collaborating Clinics Versus American College of Rheumatology Criteria. A comparative study of 2,055 patients from a real-life, international systemic lupus erythematosus cohort. Arthritis Care Res (Hoboken). 2015 Aug;67(8):1180-5. doi: 10.1002/acr.22539

48. Kasitanon N, Intaniwet T, Wangkaew S, et al. The clinically quiescent phase in early-diagnosed SLE patients: inception cohort study. Rheumatology (Oxford). 2015 May;54(5):868-75. doi: 10.1093/rheumatology/keu406. Epub 2014 Oct 21.

49. Марцевич СЮ, Дроздова ЛЮ, Кутишенко НП, Гинзбург МЛ. Регистры в кардиологии. Правила проведения, возможности, перспективы. Москва; 2013 [Martsevich SYu, Drozdova LYu, Kutishenko NP, Ginzburg ML. Registry v kardiologii. Pravila provedeniya, vozmozhnosti, perspektivy [Registers in cardiology. Terms of opportunities and prospects]. Moscow; 2013].

50. Watson L, Beresford MW, Maynes C, et al. The indications, efficacy and adverse events of rituximab in a large cohort of patients with juvenile-onset SLE. Lupus. 2015;24(1):10-7. doi: 10.1177/0961203314547793