Seminars in Arthritis and Rheumatism
Volume 39, Issue 4 , Pages 224-245 , February 2010

Lupus Registries: Evolution and Challenges

  • Liang-Jing Lu, MD, PhD

      Affiliations

    • Visiting Scholar of Division of Rheumatology, Cedars-Sinai Medical Center, Los Angeles, CA; and Associate Professor, Department of Rheumatology, Ren Ji Hospital, Shanghai Jiaotong University School of Medicine, Shanghai, China
    • ,
  • Daniel J. Wallace, MD

      Affiliations

    • Clinical Professor of Medicine, Cedars-Sinai Medical Center, David Geffen School of Medicine at UCLA, Los Angeles, CA
    • ,
  • Sandra V. Navarra, MD

      Affiliations

    • Professor, Section of Rheumatology, Clinical Immunology and Osteoporosis, University of Santo Tomas, Manila, Philippines
    • ,
  • Michael H. Weisman, MD

      Affiliations

    • Director, Division of Rheumatology, Cedars-Sinai Medical Center, Professor of Medicine, David Geffen School of Medicine at UCLA, Los Angeles, CA
    • Corresponding Author InformationAddress reprint requests to Michael H. Weisman, MD, Cedars Sinai Medical Center, 8700 Beverly Boulevard, Suite B131, Los Angeles, CA 90048

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  244. Fitzgerald SG, Kwoh CK, McCarty D, Ramsey-Goldman R, Medsger TA, Manzi S. The Lupus Foundation as an additional source for case ascertainment: developing a community-based lupus registry. Arthritis Care Res. 2000;13:137–140
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  247. Bouali H, Nietert P, Nowling TM, Pandey J, Dooley MA, Cooper G, et al. Association of the G-463A myeloperoxidase gene polymorphism with renal disease in African Americans with systemic lupus erythematosus. J Rheumatol. 2007;34:2028–2034
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  256. Fraser PA, Ding WZ, Mohseni M, Treadwell EL, Dooley MA, St Clair EW, et al. Glutathione S-transferase M null homozygosity and risk of systemic lupus erythematosus associated with sun exposure: a possible gene-environment interaction for autoimmunity. J Rheumatol. 2003;30:276–282
  257. Parks CG, Cooper GS, Nylander-French LA, Sanderson WT, Dement JM, Cohen PL, et al. Occupational exposure to crystalline silica and risk of systemic lupus erythematosus: a population-based, case-control study in the southeastern United States. Arthritis Rheum. 2002;46:1840–1850
  258. Cooper GS, Parks CG, Treadwell EL, St Clair EW, Gilkeson GS, Cohen PL, et al. Differences by race, sex and age in the clinical and immunologic features of recently diagnosed systemic lupus erythematosus patients in the southeastern United States. Lupus. 2002;11:161–167
  259. Pandey JP, Cooper GS, Treadwell EL, Gilkeson GS, St Clair EW, Dooley MA. Immunoglobulin GM and KM allotypes in systemic lupus erythematosus. Exp Clin Immunogenet. 2001;18:117–122
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  261. Campbell R, Cooper GS, Gilkeson GS. Two aspects of the clinical and humanistic burden of systemic lupus erythematosus: mortality risk and quality of life early in the course of disease. Arthritis Rheum. 2008;59:458–464
  262. Anderson E, Nietert PJ, Kamen DL, Gilkeson GS. Ethnic disparities among patients with systemic lupus erythematosus in South Carolina. J Rheumatol. 2008;35:819–825
  263. Parks CG, Cooper GS, Hudson LL, Dooley MA, Treadwell EL, St Clair EW, et al. Association of Epstein-Barr virus with systemic lupus erythematosus: effect modification by race, age, and cytotoxic T lymphocyte-associated antigen 4 genotype. Arthritis Rheum. 2005;52:1148–1159
  264. Oates JC, Levesque MC, Hobbs MR, Smith EG, Molano ID, Page GP, et al. Nitric oxide synthase 2 promoter polymorphisms and systemic lupus erythematosus in African-Americans. J Rheumatol. 2003;30:60–67
  265. Oates JC, Christensen EF, Reilly CM, Self SE, Gilkeson GS. Prospective measure of serum 3-nitrotyrosine levels in systemic lupus erythematosus: correlation with disease activity. Proc Assoc Am Physicians. 1999;111:611–621
  266. Orlacchio A, Bruce IN, Rahman P, Kawarai T, Bernardi G, St George-Hyslop PH, et al. The apolipoprotein E2 isoform is associated with accelerated onset of Coronary Artery Disease in Systemic Lupus Erythematosus. Med Sci Monit. 2008;14:CR233–CR237
  267. Kuriya B, Gladman DD, Ibañez D, Urowitz MB. Quality of life over time in patients with systemic lupus erythematosus. Arthritis Rheum. 2008;59:181–185
  268. Chang NH, McKenzie T, Bonventi G, Landolt-Marticorena C, Fortin PR, Gladman D, et al. Expanded population of activated antigen-engaged cells within the naive B cell compartment of patients with systemic lupus erythematosus. J Immunol. 2008;180:1276–1284
  269. Nikpour M, Dempsey AA, Urowitz MB, Gladman DD, Barnes DA. Association of a gene expression profile from whole blood with disease activity in systemic lupus erythematosus. Ann Rheum Dis. 2007 Dec 6;[Epub ahead of print]
  270. Ali YM, Urowitz MB, Ibanez D, Gladman DD. Monoclonal gammopathy in systemic lupus erythematosus. Lupus. 2007;16:426–429
  271. Urowitz MB, Ibañez D, Ali Y, Gladman DD. Outcomes in patients with active lupus nephritis requiring immunosuppressives who never received cyclophosphamide. J Rheumatol. 2007;34:1491–1496
  272. Pellett F, Siannis F, Vukin I, Lee P, Urowitz MB, Gladman DD. KIRs and autoimmune disease: studies in systemic lupus erythematosus and scleroderma. Tissue Antigens. 2007;69(Suppl 1):106–108
  273. Prasad R, Ibanez D, Gladman D, Urowitz M. The role of non-corticosteroid related factors in osteonecrosis (ON) in systemic lupus erythematosus: a nested case-control study of inception patients. Lupus. 2007;16:157–162
  274. Ibañez D, Gladman D, Urowitz M. Summarizing disease features over time: II (Variability measures of SLEDAI-2K). J Rheumatol. 2007;34:336–340
  275. Iaboni A, Ibanez D, Gladman DD, Urowitz MB, Moldofsky H. Fatigue in systemic lupus erythematosus: contributions of disordered sleep, sleepiness, and depression. J Rheumatol. 2006;33:2453–2457
  276. Urowitz MB, Ibañez D, Jerome D, Gladman DD. The effect of menopause on disease activity in systemic lupus erythematosus. J Rheumatol. 2006;33:2192–2198
  277. Johnson SR, Urowitz MB, Ibañez D, Gladman DD. Ethnic variation in disease patterns and health outcomes in systemic lupus erythematosus. J Rheumatol. 2006;33:1990–1995
  278. Tisseverasinghe A, Lim S, Greenwood C, Urowitz M, Gladman D, Fortin PR. Association between serum total cholesterol level and renal outcome in systemic lupus erythematosus. Arthritis Rheum. 2006;54:2211–2219
  279. Prasad R, Ibañez D, Gladman D, Urowitz M. Anti-dsDNA and anti-Sm antibodies do not predict damage in systemic lupus erythematosus. Lupus. 2006;15:285–291
  280. Urowitz MB, Gladman DD, Ibanez D, Berliner Y. Modification of hypertension and hypercholesterolaemia in patients with systemic lupus erythematosus: a quality improvement study. Ann Rheum Dis. 2006;65:115–117
  281. Sarabi ZS, Chang E, Bobba R, Ibanez D, Gladman D, Urowitz M, et al. Incidence rates of arterial and venous thrombosis after diagnosis of systemic lupus erythematosus. Arthritis Rheum. 2005;53:609–612
  282. Urowitz MB, Feletar M, Bruce IN, Ibañez D, Gladman DD. Prolonged remission in systemic lupus erythematosus. J Rheumatol. 2005;32:1467–1472
  283. Ibañez D, Gladman DD, Urowitz MB. Adjusted mean Systemic Lupus Erythematosus Disease Activity Index-2K is a predictor of outcome in SLE. J Rheumatol. 2005;32:824–827
  284. Benk V, Al-Herz A, Gladman D, Urowitz M, Fortin PR. Role of radiation therapy in patients with a diagnosis of both systemic lupus erythematosus and cancer. Arthritis Rheum. 2005;15:67–7253
  285. Tandon A, Ibañez D, Gladman DD, Urowitz MB. The effect of pregnancy on lupus nephritis. Arthritis Rheum. 2004;50:3941–3946
  286. Johnson SR, Harvey PJ, Floras JS, Iwanochko M, Ibanez D, Gladman DD, et al. Impaired brachial artery endothelium dependent flow mediated dilation in systemic lupus erythematosus: preliminary observations. Lupus. 2004;13:590–593
  287. Johnson SR, Gladman DD, Urowitz MB, Ibañez D, Granton JT. Pulmonary hypertension in systemic lupus. Lupus. 2004;13:506–509
  288. Pineau CA, Urowitz MB, Fortin PJ, Ibanez D, Gladman DD. Osteoporosis in systemic lupus erythematosus: factors associated with referral for bone mineral density studies, prevalence of osteoporosis and factors associated with reduced bone density. Lupus. 2004;13:436–441
  289. Bruce IN, Gladman DD, Urowitz MB. Factors associated with refractory renal disease in patients with systemic lupus erythematosus: the role of patient nonadherence. Arthritis Care Res. 2000;13:406–408
  290. Ibañez D, Urowitz MB, Gladman DD. Summarizing disease features over time: I (Adjusted mean SLEDAI derivation and application to an index of disease activity in lupus). J Rheumatol. 2003;30:1977–1982
  291. Gladman DD, Hirani N, Ibañez D, Urowitz MB. Clinically active serologically quiescent systemic lupus erythematosus. J Rheumatol. 2003;30:1960–1962
  292. Gladman DD, Urowitz MB, Rahman P, Ibañez D, Tam LS. Accrual of organ damage over time in patients with systemic lupus erythematosus. J Rheumatol. 2003;30:1955–1959
  293. Feletar M, Ibañez D, Urowitz MB, Gladman DD. The impact of the 1997 update of the American College of Rheumatology revised criteria for the classification of systemic lupus erythematosus: what has been changed?. Arthritis Rheum. 2003;48:2067–2069
  294. Brunner HI, Feldman BM, Urowitz MB, Gladman DD. Item weightings for the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Disease Damage Index using Rasch analysis do not lead to an important improvement. J Rheumatol. 2003;30:292–297
  295. Bruce IN, Gladman DD, Ibañez D, Urowitz MB. Single photon emission computed tomography dual isotope myocardial perfusion imaging in women with systemic lupus erythematosus (II. Predictive factors for perfusion abnormalities). J Rheumatol. 2003;30:288–291
  296. Urowitz MB, Kagal A, Rahman P, Gladman DD. Role of specialty care in the management of patients with systemic lupus erythematosus. J Rheumatol. 2002;29:1207–1210
  297. Gladman DD, Hussain F, Ibañez D, Urowitz MB. The nature and outcome of infection in systemic lupus erythematosus. Lupus. 2002;11:234–239
  298. Gladman DD, Ibañez D, Urowitz MB. Systemic lupus erythematosus disease activity index 2000. J Rheumatol. 2002;29:288–291
  299. Gladman DD, Chaudhry-Ahluwalia V, Ibañez D, Bogoch E, Urowitz MB. Outcomes of symptomatic osteonecrosis in 95 patients with systemic lupus erythematosus. J Rheumatol. 2001;28:2226–2229
  300. Rahman P, Gladman DD, Ibanez D, Urowitz MB. Significance of isolated hematuria and isolated pyuria in systemic lupus erythematosus. Lupus. 2001;10:418–423
  301. Gladman DD, Urowitz MB, Chaudhry-Ahluwalia V, Hallet DC, Cook RJ. Predictive factors for symptomatic osteonecrosis in patients with systemic lupus erythematosus. J Rheumatol. 2001;28:761–765
  302. Rahman P, Gladman DD, Urowitz MB, Hallett D, Tam LS. Early damage as measured by the SLICC/ACR damage index is a predictor of mortality in systemic lupus erythematosus. Lupus. 2001;10:93–96
  303. Rahman P, Aguero S, Gladman DD, Hallett D, Urowitz MB. Vascular events in hypertensive patients with systemic lupus erythematosus. Lupus. 2000;9:672–675
  304. Bruce IN, Clark-Soloninka CA, Spitzer KA, Gladman DD, Urowitz MB, Laskin CA. Prevalence of antibodies to beta2-glycoprotein I in systemic lupus erythematosus and their association with antiphospholipid antibody syndrome criteria: a single center study and literature review. J Rheumatol. 2000;27:2833–2837
  305. Bajaj S, Albert L, Gladman DD, Urowitz MB, Hallett DC, Ritchie S. Serial renal biopsy in systemic lupus erythematosus. J Rheumatol. 2000;27:2822–2826
  306. Bruce IN, Burns RJ, Gladman DD, Urowitz MB. Single photon emission computed tomography dual isotope myocardial perfusion imaging in women with systemic lupus erythematosus (I). Prevalence and distribution of abnormalities J Rheumatol. 2000;27:2372–2377
  307. Gladman DD, Urowitz MB, Slonim D, Glanz B, Carlen P, Noldy N, et al. Evaluation of predictive factors for neurocognitive dysfunction in patients with inactive systemic lupus erythematosus. J Rheumatol. 2000;27:2367–2371
  308. Tam LS, Gladman DD, Hallett DC, Rahman P, Urowitz MB. Effect of antimalarial agents on the fasting lipid profile in systemic lupus erythematosus. J Rheumatol. 2000;27:2142–2145
  309. Cook RJ, Gladman DD, Pericak D, Urowitz MB. Prediction of short term mortality in systemic lupus erythematosus with time dependent measures of disease activity. J Rheumatol. 2000;27:1892–1895
  310. Gladman DD, Koh DR, Urowitz MB, Farewell VT. Lost-to-follow-up study in systemic lupus erythematosus (SLE). Lupus. 2000;9:363–367
  311. Gladman DD, Urowitz MB, Kagal A, Hallett D. Accurately describing changes in disease activity in systemic lupus erythematosus. J Rheumatol. 2000;27:377–379
  312. Gladman DD, Goldsmith CH, Urowitz MB, Bacon P, Fortin P, Ginzler E, et al. The Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC/ACR) Damage Index for Systemic Lupus Erythematosus International Comparison. J Rheumatol. 2000;27:373–376
  313. Rahman P, Urowitz MB, Gladman DD, Bruce IN, Genest J. Contribution of traditional risk factors to coronary artery disease in patients with systemic lupus erythematosus. J Rheumatol. 1999;26:2363–2368
  314. Bruce IN, Urowitz MB, Gladman DD, Hallett DC. Natural history of hypercholesterolemia in systemic lupus erythematosus. J Rheumatol. 1999;26:2137–2143
  315. Gladman DD, Urowitz MB, Darlington GA. Disease expression and class II HLA antigens in systemic lupus erythematosus. Lupus. 1999;8:466–470
  316. Bruce IN, Hallett DC, Gladman DD, Urowitz MB. Extrarenal disease activity in systemic lupus erythematosus is not suppressed by chronic renal insufficiency or renal replacement therapy. J Rheumatol. 1999;26:1490–1494
  317. Bruce IN, Mak VC, Hallett DC, Gladman DD, Urowitz MB. Factors associated with fatigue in patients with systemic lupus erythematosus. Ann Rheum Dis. 1999;58:379–381
  318. Rahman P, Gladman DD, Urowitz MB, Yuen K, Hallett D, Bruce IN. The cholesterol lowering effect of antimalarial drugs is enhanced in patients with lupus taking corticosteroid drugs. J Rheumatol. 1999;26:325–330
  319. Rahman P, Gladman DD, Urowitz MB. Smoking interferes with efficacy of antimalarial therapy in cutaneous lupus. J Rheumatol. 1998;25:1716–1719
  320. Rahman P, Gladman DD, Urowitz MB. Clinical predictors of fetal outcome in systemic lupus erythematosus. J Rheumatol. 1998;25:1526–1530
  321. Bruce IN, Gladman DD, Urowitz MB. Detection and modification of risk factors for coronary artery disease in patients with systemic lupus erythematosus: a quality improvement study. Clin Exp Rheumatol. 1998;16:435–440
  322. Chaudhry-Ahlawalia V, Gladman DD, Urowitz MB, Bogoch E, Farewell VT. Radiographic reports in osteonecrosis of the hip in systemic lupus erythematosus. Clin Orthop Relat Res. 1998;352:131–136
  323. Wang B, Gladman DD, Urowitz MB. Fatigue in lupus is not correlated with disease activity. J Rheumatol. 1998;25:892–895
  324. Rahman P, Humphrey-Murto S, Gladman DD, Urowitz MB. Efficacy and tolerability of methotrexate in antimalarial resistant lupus arthritis. J Rheumatol. 1998;25:243–246
  325. Kreidstein S, Urowitz MB, Gladman DD, Gough J. Hormone replacement therapy in systemic lupus erythematosus. J Rheumatol. 1997;24:2149–2152
  326. Gladman DD, Urowitz MB, Gough J, MacKinnon A. Fibromyalgia is a major contributor to quality of life in lupus. J Rheumatol. 1997;24:2145–2148
  327. Rahman P, Humphrey-Murto S, Gladman DD, Urowitz MB. Cytotoxic therapy in systemic lupus erythematosus (Experience from a single center). Medicine (Baltimore). 1997;76:432–437
  328. Glanz BI, Slonim D, Urowitz MB, Gladman DD, Gough J, MacKinnon A. Pattern of neuropsychologic dysfunction in inactive systemic lupus erythematosus. Neuropsychiatry Neuropsychol Behav Neurol. 1997;10:232–238
  329. Urowitz MB, Gladman DD, Abu-Shakra M, Farewell VT. Mortality studies in systemic lupus erythematosus (Results from a single center. III. Improved survival over 24 years). J Rheumatol. 1997;24:1061–1065
  330. Gladman DD, Urowitz MB, Goldsmith CH, Fortin P, Ginzler E, Gordon C, et al. The reliability of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index in patients with systemic lupus erythematosus. Arthritis Rheum. 1997;40:809–813
  331. Gladman DD, Urowitz MB, Ong A, Gough J, MacKinnon A. A comparison of five health status instruments in patients with systemic lupuserythematosus (SLE). Lupus. 1996;5:190–195
  332. Abu-Shakra M, Gladman DD, Urowitz MB. Malignancy in systemic lupus erythematosus. Arthritis Rheum. 1996;39:1050–1054
  333. Gladman DD, Urowitz MB, Ong A, Gough J, MacKinnon A. Lack of correlation among the 3 outcomes describing SLE: disease activity, damage and quality of life. Clin Exp Rheumatol. 1996;14:305–308
  334. Abu-Shakra M, Urowitz MB, Gladman DD, Ritchie S. The significance of anticardiolipin antibodies in patients with lupus nephritis. Lupus. 1996;5:70–73
  335. Abu-Shakra M, Gladman DD, Urowitz MB, Farewell V. Anticardiolipin antibodies in systemic lupus erythematosus: clinical and laboratory correlations. Am J Med. 1995;99:624–628
  336. Abu-Shakra M, Urowitz MB, Gladman DD, Gough J. Mortality studies in systemic lupus erythematosus (Results from a single center. II. Predictor variables for mortality). J Rheumatol. 1995;22:1265–1270
  337. Kovacs JA, Urowitz MB, Gladman DD, Zeman R. The use of single photon emission computerized tomography in neuropsychiatric SLE: a pilot study. J Rheumatol. 1995;22:1247–1253
  338. Walz LeBlanc BA, Gladman DD, Urowitz MB. Serologically active clinically quiescent systemic lupus erythematosus—predictors of clinical flares. J Rheumatol. 1994;21:2239–2241
  339. Pauzner R, Urowitz MB, Gladman DD, Gough JM. Prolactin in systemic lupus erythematosus. J Rheumatol. 1994;21:2064–2067
  340. Pauzner R, Urowitz M, Gladman D, Gough J. Antineutrophil cytoplasmic antibodies in systemic lupus erythematosus. J Rheumatol. 1994;21:1670–1673
  341. Walz LeBlanc BA, Dagenais P, Urowitz MB, Gladman DD. Methotrexate in systemic lupus erythematosus. J Rheumatol. 1994;21:836–838
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 The authors have no conflicts of interest to disclose.

PII: S0049-0172(08)00156-X

doi: 10.1016/j.semarthrit.2008.08.009

Seminars in Arthritis and Rheumatism
Volume 39, Issue 4 , Pages 224-245 , February 2010

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