European Competence Network on Mastocytosis (ECNM): 10-year jubilee, update, and future perspectives

Wiener Klinische Wochenschrift

Volumn 124, Issue 23-24, 2012, Pages 807-814

  Valent, Peter ^a   Arock, Michel ^b   Bonadonna, Patrizia ^c   Brockow, Knut ^d   Broesby Olsen, Sigurd ^e   Escribano, Luis ^f   Gleixner, Karoline V ^a   Grattan, Clive ^g   Hadzijusufovic, Emir ^a   Hägglund, Hans ^h   Hermine, Olivier ⁱ   Horny, Hans Peter ^j   Kluin Nelemans, Hanneke C ^k   Maurer, Marcus ^l   Niedoszytko, Marek ^m   Nedoszytko, Boguslaw ^m   Nilsson, Gunnar ⁿ   Oude Elberink, Hanneke N G ^k   Orfao, Alberto ^o   Radia, Deepti ^p   Reiter, Andreas ^q   Siebenhaar, Frank ^l   Sotlar, Karl ^j   Sperr, Wolfgang R ^a   Triggiani, Massimo ^r   Vandoormaal, Jaap J ^k   Várkonyi, Judit ^s   Yavuz, Selim ^t   Hartmann, Karin ^u   more..

^a MEDICAL UNIVERSITY OF VIENNA   (Austria)

^b Ecole Normale Superieure de Cachan   (France)

^c UNIVERSITY HOSPITAL OF VERONA   (Italy)

^d TECHNICAL UNIVERSITY OF MUNICH   (Germany)

^e ODENSE UNIVERSITY HOSPITAL   (Denmark)

^f HOSPITAL VIRGEN DE LA SALUD   (Spain)

^g NORFOLK AND NORWICH UNIVERSITY HOSPITAL   (United Kingdom)

^h KAROLINSKA UNIVERSITY HOSPITAL   (Sweden)

ⁱ UNIVERSITÉ PARIS DESCARTES   (France)

^j UNIVERSITY OF MUNICH   (Germany)

^k UNIVERSITY MEDICAL CENTER GRONINGEN   (Netherlands)

^l CHARITÉ UNIVERSITÄTSMEDIZIN BERLIN   (Germany)

^m MEDICAL UNIVERSITY OF GDANSK   (Poland)

ⁿ KAROLINSKA INSTITUTE   (Sweden)

^o UNIVERSITY OF SALAMANCA   (Spain)

^p GUY S HOSPITAL   (United Kingdom)

^q UNIVERSITY OF HEIDELBERG   (Germany)

^r UNIVERSITY OF NAPLES FEDERICO II   (Italy)

^s SEMMELWEIS UNIVERSITY   (Hungary)

^t ISTANBUL UNIVERSITY   (Turkey)

^u UNIVERSITY OF COLOGNE   (Germany)

more..

Author keywords

Classification; Competence network; Criteria; ECNM; Mast cells; Mastocytosis; Standardization

Indexed keywords

EUROPE; HUMAN; MASTOCYTOSIS; PROFESSIONAL COMPETENCE; REGISTER; REVIEW; SOCIAL NETWORK;

CLINICAL COMPETENCE; CLINICAL TRIALS AS TOPIC; CONGRESSES AS TOPIC; COOPERATIVE BEHAVIOR; EUROPE; EVIDENCE-BASED MEDICINE; FORECASTING; HUMANS; INFORMATION SERVICES; INTERDISCIPLINARY COMMUNICATION; INTERNATIONAL COOPERATION; MAST CELLS; MASTOCYTOSIS; MULTICENTER STUDIES AS TOPIC; QUALITY ASSURANCE, HEALTH CARE; REGISTRIES; SOCIETIES, MEDICAL; TRANSLATIONAL MEDICAL RESEARCH;

EID: 84876288398     PISSN: 00435325     EISSN: 16137671     Source Type: Journal    
DOI: 10.1007/s00508-012-0293-z     Document Type: Review

References (48)

1. Lennert K, Parwaresch MR. Mast cells and mast cell neoplasia: a review. Histopathology. 1979;3:349-65.
2. Metcalfe DD. Classification and diagnosis of mastocytosis: current status. J Invest Dermatol. 1991;96:2S-4S.
3. Austen KF. Systemic mastocytosis. N Engl J Med. 1992;326:639-40.
4. Valent P. Biology, classification and treatment of human mastocytosis. Wien Klin Wochenschr. 1996;108:385-97.
5. Escribano L, Akin C, Castells M, Orfao A, Metcalfe DD. Mastocytosis: current concepts in diagnosis and treatment. Ann Hematol. 2002;81:677-90.
6. Valent P, Akin C, Sperr WR, Horny HP, Arock M, Lechner K, et al. Diagnosis and treatment of systemic mastocytosis: state of the art. Br J Haematol. 2003;122:1-23.
7. Valent P, Sperr WR, Schwartz LB, Horny HP. Diagnosis and classification of mast cell proliferative disorders: delineation from immunologic diseases and non-mast cell hematopoietic neoplasms. J Allergy Clin Immunol. 2004;114:3-11.
8. Horny HP, Sotlar K, Valent P. Mastocytosis: state of the art. Pathobiology. 2007;74:121-32.
9. Metcalfe DD. Mast cells and mastocytosis. Blood. 2008;112:946-56.
10. Arock M, Valent P. Pathogenesis, classification and treatment of mastocytosis: state of the art in 2010 and future perspectives. Expert Rev Hematol. 2010;3:497-516.
11. Valent P, Horny H-P, Escribano L, Longley JB, Li CY, Schwartz LB, et al. Diagnostic criteria and classification of mastocytosis: a consensus proposal. Report of 'Year 2000 Working Conference on Mastocytosis'. Leuk Res. 2001;25:603-25.
12. Valent P, Akin C, Sperr WR, Horny HP, Metcalfe DD. Mast cell proliferative disorders: current view on variants recognized by the World Health Organization. Hematol Oncol Clin North Am. 2003;17:1227-41.
13. Valent P, Horny H-P, Li CY, Longley JB, Metcalfe DD, Parwaresch RM, Bennett JM. Mastocytosis. In: Jaffe ES, Harris NL, Stein H, Vardiman JW, editors. World Health Organization (WHO) classification of tumours of haematopoietic and lymphoid tissues. IARC: Lyon; 2001. pp. 291-302.
14. Horny HP, Akin C, Metcalfe DD, Bain BJ, Akin C, Escribano L, et al. Mastocytosis (mast cell disease). In: Swerdlow SH, Campo E, Harris NL, Jaffe ES, Pileri SA, Stein H, Thiele J, Vardiman JW, editors. World Health Organization (WHO) classification of tumours: pathology and genetics of tumours of haematopoietic and lymphoid tissues. IARC: Lyon; 2008. pp. 54-63.
15. Sperr WR, Horny HP, Valent P. Spectrum of associated clonal hematologic non-mast cell lineage disorders occurring in patients with systemic mastocytosis. Int Arch Allergy Immunol. 2002;127:140-2.
16. Horny HP, Sotlar K, Sperr WR, Valent P. Systemic mastocytosis with associated clonal haematological non-mast cell lineage diseases: a histopathological challenge. J Clin Pathol. 2004;57:604-8.
17. Lim KH, Tefferi A, Lasho TL, Finke C, Patnaik M, Butterfield JH, et al. Systemic mastocytosis in 342 consecutive adults: survival studies and prognostic factors. Blood. 2009;113:5727-36.
18. Pardanani A, Lim KH, Lasho TL, Finke CM, McClure RF, Li CY, et al. WHO subvariants of indolent mastocytosis: clinical details and prognostic evaluation in 159 consecutive adults. Blood. 2010;115:150-1.
19. Sperr WR, Valent P. Diagnosis, progression patterns and prognostication in mastocytosis. Expert Rev Hematol. 2012;5:261-74.
20. Castells M, Austen KF. Mastocytosis: mediator-related signs and symptoms. Int Arch Allergy Immunol. 2002;127:147-52.
21. Escribano L, Akin C, Castells M, Orfao A, Metcalfe DD. Mastocytosis: current concepts in diagnosis and treatment. Ann Hematol. 2002;81:677-90.
22. Brockow K, Jofer C, Behrendt H, Ring J. Anaphylaxis in patients with mastocytosis: a study on history, clinical features and risk factors in 120 patients. Allergy. 2008;63:226-32.
23. Bonadonna P, Perbellini O, Passalacqua G, Caruso B, Colarossi S, Dal Fior D, et al. Clonal mast cell disorders in patients with systemic reactions to Hymenoptera stings and increased serum tryptase levels. J Allergy Clin Immunol. 2009;123:680-6.
24. Valent P, Akin C, Escribano L, Födinger M, Hartmann K, Brockow K, et al. Standards and standardization in mastocytosis: consensus statements on diagnostics, treatment recommendations and response criteria. Eur J Clin Invest. 2007;37:435-53.
25. Sonneck K, Florian S, Müllauer L, Wimazal F, Födinger M, Sperr WR, et al. Diagnostic and subdiagnostic accumulation of mast cells in the bone marrow of patients with anaphylaxis: monoclonal mast cell activation syndrome. Int Arch Allergy Immunol. 2007;142:158-64.
26. Valent P, Akin C, Arock M, Brockow K, Butterfield JH, Carter MC, et al. Definitions, criteria and global classification of mast cell disorders with special reference to mast cell activation syndromes: a consensus proposal. Int Arch Allergy Immunol. 2012;157:215-25.
27. Akin C, Valent P, Metcalfe DD. Mast cell activation syndrome: proposed diagnostic criteria. J Allergy Clin Immunol. 2010;126:1099-104.e4.
28. Hartmann K, Henz BM. Cutaneous mastocytosis - clinical heterogeneity. Int Arch Allergy Immunol. 2002;127:143-6.
29. Sokol H, Georgin-Lavialle S, Grandpeix-Guyodo C, Canioni D, Barete S, Dubreuil P, et al. Gastrointestinal involvement and manifestations in systemic mastocytosis. Inflamm Bowel Dis. 2010;16:1247-53.
30. Delsignore JL, Dvoretsky PM, Hicks DG, O'Keefe RJ, Rosier RN. Mastocytosis presenting as a skeletal disorder. Iowa Orthop J. 1996;16:126-34.
31. Valent P, Akin C, Sperr WR, Escribano L, Arock M, Horny HP, et al. Aggressive systemic mastocytosis and related mast cell disorders: current treatment options and proposed response criteria. Leuk Res. 2003;27:635-41.
32. Ellis JM. Urticaria pigmentosa. A report of a case with autopsy. AMA Arch Pathol. 1949;48:426-9.
33. Efrati P, Klajman A, Spitz H. Mast cell leukemia? Malignant mastocytosis with leukemia-like manifestations. Blood. 1957;12:869-82.
34. Friedman BI, Will JJ, Freiman DG, Braunstein H. Tissue mast cell leukemia. Blood. 1958;13:70-8.
35. Schwartz LB, Sakai K, Bradford TR, Ren S, Zweiman B, Worobec AS, Metcalfe DD. The alpha form of human tryptase is the predominant type present in blood at baseline in normal subjects and is elevated in those with systemic mastocytosis. J Clin Invest. 1995;96:2702-10.
36. Nagata H, Worobec AS, Oh CK, Chowdhury BA, Tannenbaum S, Suzuki Y, Metcalfe DD. Identification of a point mutation in the catalytic domain of the protooncogene c-kit in peripheral blood mononuclear cells of patients who have mastocytosis with an associated hematologic disorder. Proc Natl Acad Sci U S A. 1995;92:10560-4.
37. Longley BJ, Tyrrell L, Lu SZ, Ma YS, Langley K, Ding TG, Duffy T, Jacobs P, Tang LH, Modlin I. Somatic c-KIT activating mutation in urticaria pigmentosa and aggressive mastocytosis: establishment of clonality in a human mast cell neoplasm. Nat Genet. 1996;12:312-4.
38. Escribano L, Orfao A, Díaz-Agustin B, Villarrubia J, Cerveró C, López A, Marcos MA, Bellas C, Fernández- Cañadas S, Cuevas M, Sánchez A, Velasco JL, Navarro JL, Miguel JF. Indolent systemic mast cell disease in adults: immunophenotypic characterization of bone marrow mast cells and its diagnostic implications. Blood. 1998;91:2731-6.
39. Horny HP, Sillaber C, Menke D, Kaiserling E, Wehrmann M, Stehberger B, Chott A, Lechner K, Lennert K, Valent P. Diagnostic value of immunostaining for tryptase in patients with mastocytosis. Am J Surg Pathol. 1998;22:1132-40.
40. Sperr WR, Escribano L, Jordan JH, Schernthaner GH, Kundi M, Horny HP, Valent P. Morphologic properties of neoplastic mast cells: delineation of stages of maturation and implication for cytological grading of mastocytosis. Leuk Res. 2001;25:529-36.
41. Fritsche-Polanz R, Jordan JH, Feix A, Sperr WR, Sunder-Plassmann G, Valent P, Födinger M. Mutation analysis of C-KIT in patients with myelodysplastic syndromes without mastocytosis and cases of systemic mastocytosis. Br J Haematol. 2001;113:357-64.
42. Valent P, Escribano L, Parwaresch RM, Schemmel V, Schwartz LB, Sotlar K, Sperr WR, Horny HP. Recent advances in mastocytosis research. Summary of the Vienna Mastocytosis Meeting 1998. Int Arch Allergy Immunol. 1999;120:1-7.
43. Valent P, Arock M, Bischoff SC, Bühring HJ, Brockow K, Escribano L, Födinger M, Grabbe J, Hartmann K, Henz BM, Horny HP, Kluin-Nelemans HC, Lima M, Marone G, Orfao A, Parwaresch RM, Sillaber C, Sotlar K, Sperr WR, Triggiani M, Van Doormaal JJ, Wolff K, Zuberbier T. The European Competence Network on Mastocytosis (ECNM). Wien Klin Wochenschr. 2004;116:647-51.
44. The European Competence Network on Mastocytosis - ECNM 2006: homepage on web-link: http://www.ecnm.net. (Access: 2012)
45. Gotlib J, Berubé C, Growney JD, Chen CC, George TI, Williams C, Kajiguchi T, Ruan J, Lilleberg SL, Durocher JA, Lichy JH, Wang Y, Cohen PS, Arber DA, Heinrich MC, Neckers L, Galli SJ, Gilliland DG, Coutré SE. Activity of the tyrosine kinase inhibitor PKC412 in a patient with mast cell leukemia with the D816V KIT mutation. Blood. 2005;106:2865-70.
46. Gleixner KV, Mayerhofer M, Aichberger KJ, Derdak S, Sonneck K, Böhm A, Gruze A, Samorapoompichit P, Manley PW, Fabbro D, Pickl WF, Sillaber C, Valent P. PKC412 inhibits in vitro growth of neoplastic human mast cells expressing the D816V-mutated variant of KIT: comparison with AMN107, imatinib, and cladribine (2CdA) and evaluation of cooperative drug effects. Blood. 2006;107:752-9.
47. Gleixner KV, Mayerhofer M, Sonneck K, Gruze A, Samorapoompichit P, Baumgartner C, Lee FY, Aichberger KJ, Manley PW, Fabbro D, Pickl WF, Sillaber C, Valent P. Synergistic growth-inhibitory effects of two tyrosine kinase inhibitors, dasatinib and PKC412, on neoplastic mast cells expressing the D816V-mutated oncogenic variant of KIT. Haematologica. 2007;92:1451-9.
48. Krauth MT, Mirkina I, Herrmann H, Baumgartner C, Kneidinger M, Valent P. Midostaurin (PKC412) inhibits immunoglobulin E-dependent activation and mediator release in human blood basophils and mast cells. Clin Exp Allergy. 2009;39:1711-20.