The NHLBI lymphangioleiomyomatosis registry: Characteristics of 230 patients at enrollment

American Journal of Respiratory and Critical Care Medicine

Volumn 173, Issue 1, 2006, Pages 105-111

  Ryu, Jay H ^a   Moss, Joel ^b   Beck, Gerald J ^b   Lee, Jar Chi ^b   Brown, Kevin K ^b   Chapman, Jeffrey T ^b   Finlay, Geraldine A ^b   Olson, Eric J ^b   Ruoss, Stephen J ^b   Maurer, Janet R ^b   Raffin, Thomas A ^b   Peavy, Hannah H ^b   McCarthy, Kevin ^b   Taveira DaSilva, Angelo ^b   McCormack, Francis X ^b   Avila, Nilo A ^b   DeCastro, Rosamma M ^b   Jacobs, Susan S ^b   Stylianou, Mario ^b   Fanburg, Barry L ^b  

^a MAYO CLINIC   (United States)

^b NONE

Author keywords

Lymphangioleiomyomatosis; Registry; Tuberous sclerosis

Indexed keywords

BRONCHODILATING AGENT; CORTICOSTEROID; PROGESTERONE;

ADULT; AGE DISTRIBUTION; AGED; ARTICLE; CONTROLLED STUDY; DISEASE REGISTRY; FEMALE; HUMAN; LUNG FUNCTION TEST; LUNG LYMPHANGIOLEIOMYOMATOSIS; LUNG TRANSPLANTATION; LYMPHANGIOLEIOMYOMATOSIS; MAJOR CLINICAL STUDY; ONSET AGE; OXYGEN THERAPY; PNEUMOTHORAX; PRIORITY JOURNAL; SPIROMETRY; TUBEROUS SCLEROSIS;

ADOLESCENT; ADULT; AGED; FEMALE; HUMANS; LUNG DISEASES; LYMPHANGIOLEIOMYOMATOSIS; MIDDLE AGED; QUALITY OF LIFE; REGISTRIES; RESPIRATORY FUNCTION TESTS; UNITED STATES;

EID: 30344457333     PISSN: 1073449X     EISSN: 1073449X     Source Type: Journal    
DOI: 10.1164/rccm.200409-1298OC     Document Type: Article

References (40)

1. Kelly J, Moss J. Lymphangioleiomyomatosis. Am J Med Sci 2001;321:17-25.
2. Johnson S. Lymphangioleiomyomatosis: clinical features, management and basic mechanisms. Thorax 1999;54:254-264.
3. Glassberg MK. Lymphangioleiomyomatosis. Clin Chest Med 2004;25:573-582.
4. Taylor JR, Ryu JH, Colby TV, Raffin TA. Lymphangioleiomyomatosis: clinical course in 32 patients. N Engl J Med 1990;323:1254-1260.
5. Kitaichi M, Nishimura K, Itoh H, Izumi T. Pulmonary lymphangioleiomyomatosis: a report of 46 patients including a clinicopathologic study of prognostic factors. Am J Respir Crit Care Med 1995;151:527-533.
6. Urban T, Lazor R, Lacronique J, Murris M, Labrune S, Valyere D, Cordier JF. Pulmonary lymphangioleiomyomatosis: a study of 69 patients. Medicine 1999;78:321-337.
7. Chu SC, Horiba K, Usuki J, Avila NA, Chen CC, Travis WD, Ferrans VJ, Moss J. Comprehensive evaluation of 35 patients with lymphangioleiomyomatosis. Chest 1999;115:1041-1052.
8. Johnson SR, Tattersfield AE. Clinical experience of lymphangioleiomyomatosis in the UK. Thorax 2000;5:1052-1057.
9. Roach ES, DiMario FJ, Kandt RS, Northrup H. Tuberous sclerosis consensus conference: recommendations for diagnostic evaluation. J Child Neurol 1999;14:402-407.
10. Aubry MC, Myers JL, Ryu JH, Petri-Henske E, Jalal SM, Tazelaar HD. Pulmonary lymphangioleiomyomatosis and micronodular pneumocyte hyperplasia in a male patient with tuberous sclerosis complex. Am J Respir Crit Care Med 2000;162:749-752.
11. Costello LC, Hartman TE, Ryu JH. High frequency of pulmonary lymphangioleiomyomatosis in adult women with tuberous sclerosis complex. Mayo Clin Proc 2000;75:591-594.
12. Franz DN, Brody A, Meyer C, Leonard J, Chuck G, Dabora S, Sethuraman G, Colby TV, Kwiatkowski DJ, McCormack FX. Mutational and radiographic analysis of pulmonary disease consistent with lymphangioleiomyomatosis and micronodular pneumocyte hyperplasia in women with tuberous sclerosis. Am J Respir Crit Care Med 2001;164:661-668.
13. Moss J, Avila NA, Barnes PM, Litzenberger RA, Bechtle J, Brooks PG, Hedin CJ, Hunsberger S, Kristof AS. Prevalence and clinical characteristics of lymphangioleiomyomatosis (LAM) in patients with tuberous sclerosis complex. Am J Respir Crit Care Med 2001;163:669-671.
14. Sullivan EJ, Beck GJ, Stoller JK. The registry for individuals with lymphangioleiomyomatosis. In: Moss J, editor. LAM and other diseases characterized by smooth muscle proliferation. New York: Marcel Dekker; 1999. pp. 45-64.
15. Taveira-DaSilva AM, Stylianou MP, Hedin CJ, Kristof AS, Avila NA, Rabel A, Travis WD, Moss J. Maximal oxygen uptake and severity of disease in lymphangioleiomyomatosis. Am J Respir Crit Care Med 2003;168:1427-1431.
16. Bonelli FS, Hartman TE, Swensen SJ, Sherrick A. Accuracy of high-resolution CT in diagnosing lung diseases. AJR Am J Roentgenol 1998;170:1507-1512.
17. American Thoracic Society. 1994 update on standardization of spirometry. Am J Respir Crit Care Med 1995;152:1107-1136.
18. American Thoracic Society. 1995 update on single-breath carbon monoxide diffusing capacity (transfer factor): recommendations for a standard technique. Am J Respir Crit Care Med 1995;152:1299-1307.
19. American Thoracic Society. Lung function testing: selection of reference values and interpretative strategies. Am Rev Respir Dis 1991;44:1202-1218.
20. CO) and carbon monoxide transfer coefficient (Kco) for alveolar volume. Respir Med 2000;94:28-37.
21. Hankinson JL, Odencrantz JR, Fedan KB. Spirometric reference values from a sample of the general US population. Am J Respir Crit Care Med 1999;159:179-187.
22. Crapo R, Morris A, Nixon C. Lung volumes in healthy nonsmoking adults. Clin Respir Physiol 1982;18:419-425.
23. Miller A, Thornton JC, Warshaw R, Anderson H, Teirstein AS, Selikoff IJ. Single breath diffusing capacity in a representative sample of Michigan, a large industrial state: predicted values, lower limits of normal and frequencies of abnormality by smoking history. Am Rev Respir Dis 1983;127:270-277.
24. Ware JE, Kosinski M, Keller SD. SF-36 Physical & Mental Health Summary Scales: a user's manual. Boston, MA: The Health Institute, New England Medical Center; 1994.
25. Jones PW, Quirk FH, Baveystock CM, Littlejohns P. A self-complete measure of health status for chronic airflow limitation: the St. George's Respiratory Questionnaire. Am Rev Respir Dis 1992;145:1321-1327.
26. Jones PW, Bosh TK. Quality of life changes in COPD patients treated with salmeterol. Am J Respir Crit Care Med 1997;155:1283-1289.
27. Cook JA, Oliver K, Mueller RF, Sampson J. A cross sectional study of renal involvement in tuberous sclerosis. J Med Genet 1996;33:480-484.
28. Avila NA, Kelly JA, Chu SC, Dwyer AJ, Moss J. Lymphangioleiomyomatosis: abdominopelvic CT and US findings. Radiology 2000;216:147-153.
29. Lendvay TS, Marshall FF. The tuberous sclerosis complex and its highly variable manifestations. J Urol 2003;169:1635-1642.
30. Taveira-DaSilva AM, Hedin CJ, Stylianou MP, Travis WD, Matsui K, Ferrans VJ, Moss J. Reversible airflow obstruction, proliferation of abnormal smooth muscle cells and impairment of gas exchange as predictors of outcome in lymphangioleiomyomatosis. Am J Respir Crit Care Med 2001;164:1072-1076.
31. Shen A, Iseman MD, Waldron JA, King TE. Exacerbation of pulmonary lymphangioleiomyomatosis by exogenous estrogens. Chest 1987;91:782-785.
32. Yano S. Exacerbation of pulmonary lymphangioleiomyomatosis by exogenous oestrogen used for infertility treatment. Thorax 2002;57:1085-1086.
33. Oberstein EM, Fleming LE, Gomez-Marin O, Glassberg MK. Pulmonary lymphangioleiomyomatosis (LAM): examining oral contraceptive pills and the onset of disease. J Womens Health 2003;12:81-85.
34. Logginidou H, Ao X, Russo I, Henske EP. Frequent estrogen and progesterone receptor immunoreactivity in renal angiomyolipomas from women with pulmonary lymphangioleiomyomatosis. Chest 2000;117:25-30.
35. Matsui K, Takeda K, Yu ZX, Valencia J, Travis WF, Moss J, Ferrans VJ. Downregulation of estrogen and progesterone receptors in the abnormal smooth muscle cells in pulmonary lymphangioleiomyomatosis following therapy. Am J Respir Crit Care Med 2000;161:1002-1009.
36. McCarty KS Jr, Mossler JA, McLelland R, Sieker HO. Pulmonary lymphangiomyomatosis responsive to progesterone. N Engl J Med 1980;303:1461-1465.
37. Johnson SR, Tattersfield AE. Decline in lung function in lymphangioleiomyomatosis: relation to menopause and progesterone treatment. Am J Respir Crit Care Med 1999;160:628-633.
38. Taveira-DaSilva AM, Stylianou MP, Hedin CJ, Hathaway O, Moss J. Decline in lung function in patients with lymphangioleiomyomatosis treated with or without progesterone. Chest 2004;126:1867-1874.
39. Mahler DA, Mackowiak JI. Evaluation of the short-form 36-item questionnaire to measure health-related quality of life in patients with COPD. Chest 1995;107:1585-1589.
40. van Manen JG, Bindels PJ, Dekker FW, Bottema BJ, van der Zee JS, Ijzermans CJ, Schade E. The influence of COPD on health-related quality of life independent of the influence of comorbidity. J Clin Epidemiol 2003;56:1177-1184.