Research Registry for Neonatal Lupus

Material available for distribution with RRNL Enrollment  Packages

Material available for distribution with RRNL Follow-up Questionnaires

(2007)

Izmirly PM, Rivera TL, Buyon JP.  Neonatal lupus syndrome.  Rheum Dis Clin N Am. 2007; 33:267-285.

Summary of Approved RRNL Research Protocols [Version Date: 30June2007]

(2006)

Buyon JP, Clancy RM.  Neonatal Lupus.  In Dubois’ Lupus Erythematosus, 7th edition.  Wallace DJ, Hahn BH, eds. 2006; pp.1058-1080.

Askanase AD, Buyon JP.  Neonatal Lupus: Clinical perspectives.  In Systemic Lupus Erythematosus: A Companion to Rheumatology. Tsokos GC, Gordon C, Smolen JS, eds. 2006; pp. 466-472.

Friedman DM, Kim MY, Copel JA, Davis C, Buyon JP. Utility of cardiac monitoring in fetuses at risk of congenital heart block: The PR interval and dexamethasone evaluation (PRIDE) prospective study. [abstract] Arthritis Rheum 2006;54(suppl):S689.  [Poster presentation, 2006 Annual Meeting of the American College of Rheumatology(ACR), Washington, DC.]

Askanase AD, Katholi MC, Harris RR, Buyon JP. Frequency of attention disorders in children exposed to anti-SSA/Ro-SSB/La antibodies. [abstract] Arthritis Rheum 2006; 54(suppl):S163. [Poster presentation, 2006 Annual Meeting of the American College of Rheumatology(ACR), Washington, DC.]

2005

Askanase AD, Katholi M, Buyon J. Frequency of neuropsychiatric disorders, autoimmune diseases and autoantibodies in anti-SSA/Ro-exposed children. [abstract] Arthritis Rheum 2005; 52(9 suppl): S528. [Poster presentation, 2005 Annual Meeting of the American College of Rheumatology] (Protocol 03-053)

Birnbaum BK, Katholi M, Buyon JP. Prospective evaluation of disease progression in mothers of children enrolled in the Research Registry for Neonatal Lupus. [abstract] Arthritis Rheum 2005; 52(9 suppl): S464. [Oral presentation in concurrent session, 2005 Annual Meeting of the American College of Rheumatology, San Diego, CA]

Buyon JP, Clancy RM.  Neonatal Lupus: Basic research and clinical perspectives.  Rheum Dis Clin N Am 2005; 31:299-313  PMID # 15922147

Buyon JP.  A bedside perspective of neonatal lupus.  In Reproductive and Hormonal Aspects of the Systemic Autoimmune Diseases (Vol. 4, The Handbook of Systemic Autoimmune Diseases, Asherson R, ed.).  Elsevier: Amsterdam.  2005: in press

2004

Buyon JP, Rupel A, Clancy RM.  Neonatal Lupus syndromes.  Lupus 2004; 13:705-712. PMID # 15485109

Serial echo recommended in some Lupus pregnancies – Small risk of congenital heart block present.  Ob.Gyn. News.  2004;39.

Buyon JP.  Neonatal Lupus Syndrome.  (Chapter 17) - In Systemic Lupus Erythematosus, 4th Ed. Lahita R, ed.  Elsevier: Philadelphia. 2004;  pp. 449-484.

2003

Baron-Faust, Rita and Buyon, Jill P. The Autoimmune Connection:  Essential Information for Women on Diagnosis, Treatment and Getting on with Your Life. Contemporary Books, McGraw-Hill Companies, 2003.  [Book jacket and pp76-77]

Buyon JP, Clancy RM.  Neonatal Lupus: Review of proposed pathogenesis and clinical data from the U.S.-based Research Registry for Neonatal LupusAutoimmunity 2003; 36:41-50    PMID #-12765470

Buyon JP, Clancy RM.  Neonatal Lupus Syndromes.  Current Opin Rheumatol 2003; 15:535-541.  PMID # 12960477

Dinu Askanase A, Rupel A, Solomon DG, Katholi M, Buyon JP.  Recurrence rates for neonatal lupus: data from a national research registry [abstract]. Arthritis Rheum 2003; 48(suppl):S510

Solomon DG, Rupel A, Buyon JP.  Birth order and recurrence rate in autoantibody-associated congenital heart block: implications for pathogenesis and family counseling.  Lupus 2003; 12:646-647 (erratum Lupus 2003; 12:801). PMID # 12945727

Buyon JP. Clancy RM.  From antibody insult to fibrosis in neonatal lupus: the heart of the matter.  Arthritis Research & Therapy 2003; 5:2666-270.  PMID # 14680501

Askanase AD, Clancy RM, Buyon JP.  Reply to letter [Feist E, Keitzer R, Gerhold K, Horvath L, Wahren-Herlenius M, Dorner T.  Development of system lupus erythematosus in a patient with congenital heart block.] Arthritis Rheum 2003; 48:2699.

Buyon JP, Clancy RM.  Maternal autoantibodies and congenital heart block: Mediators, Markers, and Therapeutic Approach. Autoimmunity 2003; 36:41-50. PMID # 14671725

2002

Askanase AD, Miranda-Carus ME, Tang X, Katholi M, Buyon JP.  The presence of IgG antibodies reactive with components of the SSA/Ro-SSB/La complex in human breast milk: Implications in neonatal lupus.  Arthritis Rheum. Vol.46, No.1, January 2002, pp269-271. PMID # 11817601

Askanase AD, Friedman DM, Dische MR, Dubin A, Starc T, Katholi MC, Buyon JP.  Spectrum and progression of conduction abnormalities in infants born to mothers with anti-SSA/Ro-SSB/La antibodies.  Lupus 2002; 11: 145-151. PMID # 11999879

Buyon JP. Pregnancy in women with Sjogren’s: Neonatal Lupus. The Moisture Seekers – Published by the Sjogren’s Foundation Inc.(Vol.20 No.3, March ’02)

Buyon JP.  Neonatal lupus.  In Rheumatology, 3rd Ed.  Klippel JH, Dieppe PA, eds. (in press, 2002)

Friedman DM, Glickstein J, Buyon JP: Congenital Heart Block in Neonatal Lupus.  Indian J. Pediatrics, 2002; 69:517-522.

Lee LA, Sokol RJ, Buyon JP.  Hepatobiliary disease in neonatal lupus erythematosus: Prevelance and clinical characteristics in cases enrolled in a national registry.  Pediatrics (Vol. 109 No. 1 January 2002).

Martin V, Lee LA, Katholi M, Buyon JP.  Long term follow-up of children with neonatal lupus and their affected siblings.  Arthritis Rheum 2002; 46:2377-2383. PMID # 12355485

Rosenthal D, Friedman DM, Buyon J, Dubin A.  Validation of the Doppler PR interval in the fetus.  J Am Soc Echocardiogr 2002; 15:1029-30.

2001

Buyon, JP, Understanding the causes of CHB.  HJD Joint Talk-Employee news and events. April 2001;p3.

Buyon JP, Kim MY, Copel JA, Friedman DM. Anti-SSA/Ro antibodies and congenital heart block: necessary but not sufficient. Arthritis Rheum. 2001;44:1723-1727.

Moak JP, Barron KS, Hougen TJ, Cohen MH, Nordenberg A, Van Hare GF, Perez M, Cecchin F, Schneider DS, Nehgme RA, Buyon JP.  Congenital     heart block: development of late-onset cardiomyopathy, a previously underappreciated sequela.  J. Am. Coll. Cardiol. 2001; 37:238-242.

2000

Buyon JP.  Neonatal lupus.  Systemic Lupus Erythematosus in Clinical Practice 2000; 3:1-3.

Buyon JP.  The heart and skin of neonatal lupus: does maternal health matter?  Am J Medicine 2000; 108:741-743.

Buyon JP.  Systemic lupus erythematosus:  Clinical and laboratory features.  In Primer on the Rheumatic Diseases (Crofford LJ, Klippel JH, Stone J, Weyand C, eds) Arthritis Foundation, Atlanta, GA (in press, 2000)

Neiman AR, Lee LA, Weston WL, Buyon JP.  Cutaneous manifestations of neonatal lupus: characteristics of mothers and children enrolled in a national registry.  J. Pediatr. Nov. 2000; Vol.137, No.5 p.674-680. PMID # 11060534

1999

Buyon JP.  Autoimmune-associated congenital heart block: bringing bedside challenges to the bench.  In Lupus: Cellular and Molecular Pathogenesis.  Kammer GM, Tsokos GC, eds.  Humana Press; Totowa, NJ. 1999; pp.492-514.

1998

Buyon JP.  Pregnancy in women with Sjogren's syndrome: neonatal problems.  In The New Sjogren's Syndrome Handbook. Oxford University Press, New York, 1998, pp. 134-139.

Buyon JP, Hiebert R, Copel J, Craft J, Friedman D, Katholi M, Lee LA, Provost TT, Reichlin M, Rider L, Rupel A, Saleeb S, Weston W, Skovron ML: Autoimmune-associated congenital heart block: Demographics, mortality, morbidity and recurrence rates obtained from a national neonatal lupus registry. Journal of the American College of Cardiology.  1998; 31:1658-66. PMID # 9626848


Items no longer routinely sent with Enrollment Package and/or Follow-up Questionnaires:

Buyon, JP. Understanding the causes  of CHB.  HJD Joint Talk-Employee news and events. April 2001; p3.

Askanase AD, Friedman DM, Katholi P, Buyon JP.  Extended spectrum of conduction abnormalities infants born to mothers with anti-Ro/La antibodies [abstract].  Arthritis Rheum. 2001; 44(suppl):S

Miranda-Carus ME, Kimberly RP, Edberg JC, Buyon JP.  FcgR allelic polymorphisms: a candidate fetal factor in the development of congenital heart block [abstract]. Arthritis Rheum. 2001; 44(suppl):S

2000

Buyon JP, Copel JA, Friedman DM.  Anti-SSA/Ro and -SSB/La antibodies.  In Decision-Making in Obstetrics (Miller H, ed) WB Saunders (in press, 2000).

Buyon JP. Maternal disorders: Medical.  Systemic lupus erythematosus.  In Decision-Making in Obstetrics (Miller H, ed) WB Saunders (in press, 2000).

Dinu Askanase A, Miranda-Cruz E, Tang X, Buyon JP. Persistence of IgG Anti-Ro/La antibodies in human breast milk: Implications in Neonatal Lupus         [abstract].  Arthritis Rheum. 2000; 43(Suppl.):S321.  [To be presented in Poster Session at 200 ACR Annual Meeting]

Martin V, Lee L, Katholi M, Buyon J. Long term follow-up of children with neonatal lupus and their unaffected siblings [abstract]. Arthritis         Rheum. 2000; 43(Suppl.):S171  [To be presented orally in Concurrent Session at 2000 ACR Annual Meeting].

1999

Buyon JP.  Congenital heart block: autoimmune associated or autoimmune mediated?  The Immunologist 1999; 7:98-104.

Saleeb S, Copel J, Friedman D, Buyon JP.  Comparison of treatment with fluorinated glucocorticoids to natural history of autoantibody‑associated congenital heart block: Retrospective review of the Research Registry for Neonatal Lupus.  Arthritis Rheum. 1999; 42:2335-2345.

Wang D, Buyon JP, Zhu W, Chan EKL.  Defining a novel 75 kDa phosphoprotein associated with SS-A/Ro and identification of distinct human autoantibodies.  J. Clin. Invest. 1999; 104:1265-1275.

Brucato A, Buyon JP, Horsfall AC, Lee LA, Reichlin M.  Workshop report: Fourth International Workshop on Neonatal Lupus Syndromes and the Ro/SSA-La/SSB System.  Clin Exp Rheumatol 1999; 17:130-136.

Dinu Askanase A, Neiman A, Lee LA, Buyon JP.  Clinical parameters of mothers whose children have permanent and transient manifestations of neonatal lupus, and risk of crossover in siblings [abstract].  Arthritis Rheum 1999; 42 (Suppl.):S225. [Presented in Plenary Session at 1999 ACR Annual Meeting]

Dinu Askanase A, Miranda E, Mongini P, Buyon JP.  Effect of antisera from mothers of children with CHB on contractility of cultured human cardiocytes [abstract].  Arthritis Rheum 1999; 42 (Suppl.):S307.

Miranda E, Dinu Askanase A, Mongini P, Chan EKL, DiDonato F, Rebarber A, Buyon JP.  Ro/La on the surface of apoptotic cardiocytes are accessible to maternal antisera: a requisite for pathogenesis of congenital heart block (CHB) [abstract].  Arthritis Rheum 1999; 42 (Suppl.):S178.

1998

Abbot AE, Buyon JP, Friedman S.  The prevalence of cardiomyopathy observed in patients recorded in the Research Registry for Neonatal Lupus.  Arthritis Rheum. 1998; 41(suppl):S262.

Buyon JP, Brucato A.  Neonatal lupus.  Seminars in Clinical Immunology 1998; 1:5‑19.

Buyon JP. Neonatal lupus syndrome (Chap. 19).  In Systemic Lupus Erythematosus, 3rd Ed.  Lahita R, ed.  Academic Press.  1998; pp. 337-359.

Saleeb S, Copel J, Friedman D, Buyon JP.  Effect of fluorinated glucocorticoids on outcome of autoimmune-associated congenital heart block (abstract).  Arthritis Rheum. 1998; 41(suppl):S80. [Presented in plenary session at the American College of Rheumatology Annual Meeting, November 1998.]

Neiman A, Lee LA, Buyon JP.  Isolated cutaneous manifestations of neonatal lupus: characteristics of mothers and children enrolled in a National Registry (abstract). Arthritis Rheum. 1998; 41(suppl):S262.

Friedman DM, Zervoudakis I, Buyon JP.  Perinatal monitoring of fetal well-being in the presence of congenital heart block.  Am. J. Perinatology 1998; 15:669-673.

Buyon JP.  Neonatal lupus and autoantibodies reactive with SSA/Ro-SSB/La.  Scand. J. Rheumatol. 1998; 27(Suppl. 107):23-30.

Friedman DM, Hiebert R, Chin D, Copel J, Craft J, Friedman D, Lee L, Provost T, Reichlin M, Rider L, Rupel A, Weston W, Skovron ML, Buyon JP.  The natural history of autoimmune congenital heart block: the Neonatal Lupus Registry. (abstract)  Presented at The Second World Congress of Pediatric Cardiology and Cardiac Surgery, Honolulu, Hawaii, May 11-15, 1997 and published in Proceedings of the Second World Congress of Pediatric Cardiology and Cardiac Surgery. Futura. 1998; pp. 562-563.

1997

Buyon JP.  Autoantibodies reactive with SSA/Ro-SSB/La and pregnancy.  VIth International Symposium on Sjögren's Syndrome, University of Connecticut, October 15-18, 1997.  J Rheum 1997; 24(Suppl 50).

Tseng C, Friedman D, Buyon JP: Spectrum of cardiac histopathology in cases of autoimmune-associated congenital heart block (CHB) obtained from the Research Registry for Neonatal Lupus [abstract]. Arthritis Rheum. 1997; 40 (Suppl.):S333.  Dr. Tseng presented these findings in a concurrent podium session at the American College of Rheumatology Annual Meeting held in Washington, DC, November 5-7, 1997.

Brucato A, Franceschini F, Buyon JP. Neonatal lupus: Long term outcomes of mothers and children and recurrence rate. Clinical & Experimental Rheumatology 1997; 15:467‑473.

"Connective Tissue Disease Registries". reprinted from the September 1997 issue of Arthritis & Rheumatism.

1994

Jonathan Waltuck, MD, and Jill P. Buyon, MD. Autoantibody-associated congenital heart block: outcome in mothers and children. Reprinted from Annals of Internal Medicine Vol. 120; No. 7, 1 April 1994.

 


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