Rare cancers in children - The EXPeRT initiative: A report from the european cooperative study group on pediatric rare tumors

Klinische Padiatrie

Volumn 224, Issue 6, 2012, Pages 416-420

  Bisogno, G ^a   Ferrari, A ^b   Bien, E ^c   Brecht, I B ^d   Brennan, B ^e   Cecchetto, G ^a   Godzinski, J ^f   Orbach, D ^g   Reguerre, Y ^h   Stachowicz Stencel, T ^c   Schneider, D T ⁱ  

^a UNIVERSITY OF PADOVA   (Italy)

^b NATIONAL CANCER INSTITUTE   (Italy)

^c MEDICAL UNIVERSITY OF GDANSK   (Poland)

^d UNIVERSITY HOSPITAL ERLANGEN   (Germany)

^e ROYAL MANCHESTER CHILDREN S HOSPITAL   (United Kingdom)

^f T Marciniak Lower Silesia Specialist Hospital Wroclaw   (Poland)

^g Pediatric Hematology and Oncology   (France)

^h ANGERS UNIVERSITY HOSPITAL   (France)

ⁱ KLINIKUM DORTMUND   (Germany)

Author keywords

children; epidemiology; network; orphan disease; rare tumors

Indexed keywords

CISPLATIN; DOXORUBICIN;

ADRENAL CORTEX CARCINOMA; ANDROBLASTOMA; ARTICLE; BIOLOGY; BREAST CANCER; CANCER CLASSIFICATION; CANCER REGISTRY; CARCINOID; CHILDHOOD CANCER; CLINICAL RESEARCH; EPITHELIAL GONADAL TUMOR; EUROPE; EUROPEAN COOPERATIVE STUDY GROUP ON PEDIATRIC RARE TUMOR; GOVERNMENT; HEALTH CARE ORGANIZATION; HUMAN; INTERNATIONAL COOPERATION; KIDNEY CARCINOMA; LUNG CARCINOMA; MELANOMA; MESOTHELIOMA; NASOPHARYNX CARCINOMA; PANCREAS TUMOR; PANCREATOBLASTOMA; PARAGANGLIOMA; PEDIATRICS; PHEOCHROMOCYTOMA; PLEUROPULMONARY BLASTOMA; PRACTICE GUIDELINE; RARE DISEASE; RARE MESENCHYMAL TUMOR; RHABDOID TUMOR; SALIVARY GLAND TUMOR; STROMAL TUMOR; THYMOMA; THYROID CANCER;

ADOLESCENT; BIOMEDICAL RESEARCH; CANCER CARE FACILITIES; CHILD; CHILD, PRESCHOOL; CLINICAL TRIALS AS TOPIC; COHORT STUDIES; COOPERATIVE BEHAVIOR; EUROPE; HUMANS; INFANT; INTERDISCIPLINARY COMMUNICATION; INTERNATIONAL COOPERATION; NEOPLASMS; RARE DISEASES; REGISTRIES;

EID: 84868473408     PISSN: 03008630     EISSN: 14393824     Source Type: Journal    
DOI: 10.1055/s-0032-1327608     Document Type: Article

References (26)

1. Balcerska A., Godzinski J., Bien E. et al. Rare tumours - are they really rare in the Polish children population? Przegl Lek: 2004; 61 57 61
2. Benesch M., Leuschner I., Wardelmann E. et al. Gastrointestinal stromal tumours in children and young adults: a clinicopathologic series with long-term follow-up from the database of the Cooperative Weichteilsarkom Studiengruppe (CWS). Eur J Cancer: 2011; 47 1692 1698
3. Bien E., Godzinski J., Dalligna P. et al. Pancreatoblastoma: a report from the European cooperative study group for paediatric rare tumours (EXPeRT). Eur J Cancer: 2011; 47 2347 2352
4. Brecht I. B., Graf N., Schweinitz D. et al. Networking for children and adolescents with very rare tumors: foundation of the GPOH Pediatric Rare Tumor Group. Klin Pädiatr: 2009; 221 181 185
5. Brecht I. B., Schneider D. T., Klöppel G. et al. Malignant pancreatic tumors in children and young adults: evaluation of 228 patients identified through the Surveillance, Epidemiology, and End Result (SEER) database. Klin Pädiatr: 2011; 223 341 345
6. Brennan B. Pediatric pancreatic tumors: the orphan looking for a home. Pediatr Blood Cancer: 2010; 54 659 660
7. Ferrari A., Bisogno G., De Salvo G. L. et al. The challenge of very rare tumours in childhood: the Italian TREP project. Eur J Cancer: 2007; 43 654 659 (Pubitemid 46502898)
8. Ferrari A., Sultan I. When adult cancers occur in children. Expert Rev Anticancer Ther: 2010; 10 1683 1685
9. French C. A. NUT midline carcinoma. Cancer Genet Cytogenet: 2010; 203 16 20
10. Gatta G., Ferrari A., Stiller C. A. et al. Embryonal cancers in Europe. Eur J Cancer: 2012; 48 1425 1433
11. Göbel U., Gortner L. Disease management programs for adults with often diseases and competence networks for children and adolescents with rare diseases. Klin Pädiatr: 2011; 223 1 3
12. Hill D. A., Ivanovich J., Priest J. R. et al. DICER1 mutations in familial pleuropulmonary blastoma. Science: 2009; 325 965
13. Lacour B., Guyot-Goubin A., Guissou S. et al. Incidence of childhood cancer in France: National Children Cancer Registries, 2000-2004. Eur J Cancer Prev: 2010; 19 173 181
14. Merks HH M., Brecht I. B. Genetic Predisposition and Genetic Susceptibility. In: Schneider D. T., Brecht I. B., Olson T. A., Ferrari A. (eds.). Rare Tumors In Children and Adolescents. Springer: 2012; 69 96
15. Olson T. A., Schneider D. T., Brecht I. B. et al. Rare Tumors: A Different Perspective on Oncology. In: Schneider D. T., Brecht I. B., Olson T. A., Ferrari A. (eds.). Rare Tumors In Children and Adolescents. Springer: 2012; 3 15
16. Orbach D., Reguerre Y., Brecht I. B. et al. National and International Groups. In: Schneider D. T., Brecht I. B., Olson T. A., Ferrari A. (eds.). Rare Tumors In Children and Adolescents. Springer: 2012; 97 120
17. Pappo A. S., Krailo M., Chen Z. et al. Infrequent tumor initiative of the Childrens Oncology Group: initial lessons learned and their impact on future plans. J Clin Oncol: 2010; 28 5011 5016
18. Pastore G., De Salvo G. L., Bisogno G. et al. Evaluating access to pediatric cancer care centers of children and adolescents with rare tumors in Italy: the TREP project. Pediatr Blood Cancer: 2009; 53 152 155
19. Priest J. R., Watterson J., Strong L. et al. Pleuropulmonary blastoma: a marker for familial disease. JPediatr: 1996; 128 220 224 (Pubitemid 26065946)
20. Reguerre Y., Lacour B., Andre N. et al. Epidemiology and management of rare paediatric tumours within the framework of the French Society for Children Cancer. Bull Cancer: 2010; 97 1041 1045
21. Rodriguez-Galindo C., Figueiredo B. C., Zambetti G. P. et al. Biology, clinical characteristics, and management of adrenocortical tumors in children. Pediatr Blood Cancer: 2005; 45 265 273 (Pubitemid 41077159)
22. Sameshima Y., Tsunematsu Y., Watanabe S. et al. Detection of novel germ-line p53 mutations in diverse-cancer-prone families identified by selecting patients with childhood adrenocortical carcinoma. J Natl Cancer Inst: 1992; 84 703 707
23. Schneider D. T., Brecht I. B. Care for rare cancers: improved care requires improved communication. Klin Pädiatr: 2010; 222 124 126
24. Schneider D. T., Orbach D., Cecchetto G. et al. Sertoli-Leydig Cell Tumors: An Analysis of the European Cooperative Study Group on Pediatric Rare Tumors (eXpert). Pediatric Blood Cancer. 2010; 55
25. Stachowicz-Stencel T., Bien E., Balcerska A. et al. Diagnosis and treatment of renal cell carcinoma in children: a report from the Polish pediatric rare tumor study group. Klin Pädiatr: 2011; 223 138 141
26. Wagner J., Portwine C., Rabin K. et al. High frequency of germline p53 mutations in childhood adrenocortical cancer. J Natl Cancer Inst: 1994; 86 1707 1710 (Pubitemid 24354633)