Skip to main content
SpringerLink
Log in

National Initiatives in Europe

  • Chapter
  • First Online:
Rare Tumors in Children and Adolescents

Part of the book series: Pediatric Oncology ((PEDIATRICO))

  • 750 Accesses

Abstract

The pediatric oncology community historically dedicated little resources to very rare tumors. However, the situation changed during the first decade of the new millennium, when pediatric oncology centers and cooperative groups increasingly recognized the necessity to develop specifically dedicated projects. The pioneering national-scale initiatives were those launched in Italy, Poland, Germany, and France. These European projects had many similarities (and some differences) and created the basis for further broader collaborations promoting international research on extra-rare pediatric cancers.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 129.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 169.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 249.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

References

  • Bauer AJ, Stewart DR, Kamihara J et al (2019) DICER1 and associated conditions: identification of at-risk individuals and recommended surveillance strategies-response. Clin Cancer Res 25(5):1689–1690

    Article  PubMed  Google Scholar 

  • Bien E, Stachowicz-Stencel T, Balcerska A et al (2004) Incidence, characteristics and outcome of the alimentary tract carcinomas (Atc) in children: report from the Polish Paediatric Rare Tumours Study. In: Chybicka A, Kazanowska B, Toporski J (eds) Advances in pediatric bone marrow transplantation and oncology. Medical University of Wrocław, Wrocław, pp 198–202

    Google Scholar 

  • Bien E, Stachowicz-Stencel T, Balcerska A et al (2009a) Angiosarcoma in children—still uncontrollable oncological problem: the report of the polish paediatric rare tumours study. Eur J Cancer Care 18(4):411–420

    Article  CAS  Google Scholar 

  • Bien E, Stachowicz-Stencel T, Godzinski J et al (2009b) Retrospective multi-institutional study on hemangiopericytoma in polish children. Pediatr Int 51:19–24

    Article  PubMed  CAS  Google Scholar 

  • Bisogno G, Ferrari A, Bien E et al (2012a) Rare cancers in children—the EXPeRT initiative: a report from the European Cooperative Study Group on pediatric rare tumors. Klin Padiatr 2012(224):416–420

    Google Scholar 

  • Bisogno G, Soloni P, Conte M et al (2012b) Esthesioneuroblastoma in pediatric and adolescent age. A report from the TREP project in cooperation with the Italian Neuroblastoma and Soft Tissue Sarcoma Committees. BMC Cancer 5(12):117

    Article  Google Scholar 

  • Bisogno G, Tagarelli A, Schiavetti A et al (2014) Myoepithelial carcinoma treatment in children: a report from the TREP project. Pediatr Blood Cancer 61(4):643–646

    Article  CAS  PubMed  Google Scholar 

  • Boccara O, Fraitag S, Lasne D et al (2016) Kaposiform Haemangioendothelioma-spectrum lesions with Kasabach-Merritt phenomenon: retrospective analysis and long-term outcome. Acta Derm Venereol 96:77–81

    Article  CAS  PubMed  Google Scholar 

  • Brecht IB, Graf N, Schweinitz D et al (2009) Networking for children and adolescents with very rare tumors: foundation of the GPOH Pediatric Rare Tumor Group. Klin Padiatr 221(3):181–185

    Article  CAS  PubMed  Google Scholar 

  • Carretto E, Inserra A, Ferrari A et al (2011) Epithelial thymic tumours in paediatric age: a report from the TREP project. Orphanet J Rare Dis 6:28

    Article  PubMed  PubMed Central  Google Scholar 

  • Casanova M, Bisogno G, Gandola L et al (2012) A prospective protocol for nasopharyngeal carcinoma in children and adolescents: the Italian Rare Tumors in Pediatric Age (TREP) project. Cancer 118(10):2718–2725

    Article  PubMed  Google Scholar 

  • Cecchetto G, Alaggio R, Bisogno G et al (2010) Sex cord-stromal tumors of the testis in children. A clinicopathologic report from the Italian TREP project. J Pediatr Surg 45(9):1868–1873

    Article  PubMed  Google Scholar 

  • Cecchetto G, Ferrari A, Bernini G et al (2011) Sex cord stromal tumors of the ovary in children. A clinicopathological report from the Italian TREP project. Pediatr Blood Cancer 56(7):1062–1067

    Article  PubMed  Google Scholar 

  • Chiaravalli S, Guzzo M, Bisogno G et al (2014) Salivary gland carcinomas in children and adolescents: the Italian TREP project experience. Pediatr Blood Cancer 61(11):1961–1968

    Article  PubMed  Google Scholar 

  • Crocoli A, Grimaldi C, Virgone C et al (2019) Outcome after surgery for solid pseudopapillary pancreatic tumors in children: report from the TREP project-Italian Rare Tumors Study Group. Pediatr Blood Cancer 66(3):e27519

    Article  PubMed  Google Scholar 

  • Dall’Igna P, Cecchetto G, Bisogno G et al (2010) Pancreatic tumors in children and adolescents: the Italian TREP project experience. Pediatr Blood Cancer 54(5):675–680

    Article  PubMed  Google Scholar 

  • Dall’Igna P, Virgone C, De Salvo GL et al (2014) Adrenocortical tumors in Italian children: analysis of clinical characteristics and P53 status. Data from the national registries. J Pediatr Surg 49(9):1367–1371

    Article  PubMed  Google Scholar 

  • de Lambert G, Lardy H, Martelli H et al (2015) Surgical management of neuroendocrine tumors of the appendix in children and adolescents: a retrospective French multicenter study of 114 cases. Pediatr Blood Cancer 63:598–603

    Article  PubMed  Google Scholar 

  • Di Carlo D, Ferrari A, Perruccio K et al (2015) Management and follow-up of urothelial neoplasms of the bladder in children: a report from the TREP project. Pediatr Blood Cancer 62(6):1000–1003

    Article  PubMed  Google Scholar 

  • Ernestus K, Pietsch T, Gessler M et al (2006) Structure, use, and risks of biomaterial repositories of embryonal tumors. KlinPädiatr 218:132–138

    CAS  Google Scholar 

  • Ferrari A, Bisogno G, De Salvo GL et al (2007) The challenge of very rare tumours in childhood: the Italian TREP project. Eur J Cancer 43:654–659

    Article  PubMed  Google Scholar 

  • Ferrari A, Schneider DT, Bisogno G (2013) EXPeRT board. The founding of the European Cooperative Study Group on pediatric rare tumors—EXPeRT. Expert Rev Anticancer Ther 13(1):1–3

    Article  CAS  PubMed  Google Scholar 

  • Ferrari A, Bisogno G, Cecchetto G et al (2014) Cutaneous melanoma in children and adolescents: the Italian Rare Tumors in Pediatric Age project experience. J Pediatr 164(2):376–382.e1–2

    Article  PubMed  Google Scholar 

  • Ferrari A, Schneider DT, Bisogno G, et al (2021) Facing the challenges of very rare tumors of pediatric age: the European Cooperative Study Group for Pediatric Rare Tumors (EXPeRT) background, goals and achievements. Ped Blood Cancer 68(4):e28993

    Google Scholar 

  • Godzinski J, Bien E, Pietras W et al (2004) Melanoma in children: same or different as in adults. In: Chybicka A, Kazanowska B, Toporski J (eds) Advances in pediatric bone marrow transplantation and oncology. Medical University of Wroclaw, Wroclaw, pp 223–225

    Google Scholar 

  • Grapin-Dagorno C, Peycelon M, Philippe-Chomette P et al (2017) Urothelial tumors in children. Bull Cancer 104:195–201

    Article  PubMed  Google Scholar 

  • Indini A, Bisogno G, Cecchetto G, et al (2017) Gastrointestinal tract carcinomas in pediatric and adolescent age: the Italian TREP project experience. Pediatr Blood Cancer 64(12)

    Google Scholar 

  • Indolfi P, Bisogno G, Casale F et al (2007) Prognostic factors in pleuro-pulmonary blastoma. Pediatr Blood Cancer 8(3):318–323

    Article  Google Scholar 

  • Irtan S, Galmiche-Rolland L, Elie C et al (2016) Recurrence of solid Pseudopapillary neoplasms of the pancreas: results of a nationwide study of risk factors and treatment modalities. Pediatr Blood Cancer 63:1515–1521

    Article  PubMed  Google Scholar 

  • Irvine L, Stiller C (2019) Childhood cancer statistics, England annual report 2018 report on behalf of the children, teenagers and young adults expert advisory group, National Cancer Registration and Analysis Service

    Google Scholar 

  • Jouin A, Helfre S, Bolle S et al (2019) Adapted strategy to tumor response in childhood nasopharyngeal carcinoma: the French experience. Strahlenther Onkol 195(6):504–516

    Article  PubMed  Google Scholar 

  • Kaatsch P (2016). Annual Report of the German Childhood Cancer Registry 2016

    Google Scholar 

  • Lemelle L, Pierron G, Freneaux P, et al (2017) NUT carcinoma in children and adults: a multicenter retrospective study. Pediatr Blood Cancer 64

    Google Scholar 

  • Magro G, Esposito G, Cecchetto G et al (2012) Pediatric adrenocortical tumors: morphological diagnostic criteria and immunohistochemical expression of matrix metalloproteinase type 2 and human leucocyte-associated antigen (HLA) class II antigens. Results from the Italian Pediatric Rare Tumor (TREP) Study project. Hum Pathol 43(1):31–39

    Article  CAS  PubMed  Google Scholar 

  • Massi D, Tomasini C, Senetta R et al (2015) Atypical Spitz tumors in patients younger than 18 years. J Am Acad Dermatol 72(1):37–46

    Article  PubMed  Google Scholar 

  • Messinger YH, Stewart DR, Priest JR et al (2015) Pleuropulmonary blastoma: a report on 350 central pathology-confirmed pleuropulmonary blastoma cases by the International Pleuropulmonary Blastoma Registry. Cancer 121(2):276–285

    Article  PubMed  Google Scholar 

  • Moreau A, Galmiche L, Minard-Colin V et al (2017) Melanotic neuroectodermal tumor of infancy (MNTI) of the head and neck: a French multicenter study. J Craniomaxillofac Surg 46:201–206

    Article  PubMed  Google Scholar 

  • Pastore G, de Salvo GL, Bisogno G et al (2009) Evaluating access to pediatric cancer care centers of children and adolescents with rare tumors in Italy: the TREP project. Pediatr Blood Cancer 53:152–155

    Article  PubMed  Google Scholar 

  • Picard C, Orbach D, Carton M et al (2018) Revisiting the role of the pathological grading in pediatric adrenal cortical tumors: results from a national cohort study with pathological review. Mod Pathol 32:546–559

    Article  PubMed  Google Scholar 

  • Picard C, Orbach D, Dijoud F (2019) Reply to “Pathological prognostication of pediatric adrenocortical tumors: is a gold standard emerging?”. Pediatr Blood Cancer 66:e27710

    Article  PubMed  Google Scholar 

  • Rebours C, Couloigner V, Galmiche L et al (2017) Pediatric salivary gland carcinomas: diagnostic and therapeutic management. Laryngoscope 127:140–147

    Article  PubMed  Google Scholar 

  • Réguerre Y, Lacour B, André N et al (2010) Epidemiology and management of rare paediatric tumours within the framework of the French society for children cancer. Bull Cancer 97(9):1041–1045

    Article  PubMed  Google Scholar 

  • Réguerre Y, Vittaz M, Orbach D et al (2016) Cutaneous malignant melanoma in children and adolescents treated in pediatric oncology units. Pediatr Blood Cancer 63(11):1922–1927

    Google Scholar 

  • Ribeiro RC, Pinto EM, Zambetti GP et al (2012) The international pediatric adrenocortical tumor registry initiative: contributions to clinical, biological, and treatment advances in pediatric adrenocortical tumors. Mol Cell Endocrinol 351(1):37–43

    Article  CAS  PubMed  Google Scholar 

  • Ripperger T, Bielack SS, Borkhardt A et al (2017) Childhood cancer predisposition syndromes—a concise review and recommendations by the Cancer Predisposition Working Group of the Society for Pediatric Oncology and Hematology. Am J Med Genet A 173(4):1017–1037

    Article  PubMed  Google Scholar 

  • Rod J, Orbach D, Verité C et al (2014) Surgical management of thymic epithelial tumors in children: lessons from the French society of pediatric oncology and review of the literature. Pediatr Blood Cancer 61(11):1910–1915

    Article  CAS  PubMed  Google Scholar 

  • Spinelli C, Strambi S, Rossi L et al (2016) Surgical management of papillary thyroid carcinoma in childhood and adolescence: an Italian multicenter study on 250 patients. J Endocrinol Invest 39(9):1055–1059

    Article  CAS  PubMed  Google Scholar 

  • Stachowicz-Stencel T, Bien E, Balcerska A et al (2010) Thymic carcinoma in children: a report from the Polish Pediatric Rare Tumors Study. Pediatr Blood Cancer 54(7):916–920

    Article  PubMed  Google Scholar 

  • Steliarova-Foucher E et al (2005) International classification of childhood cancer, third edition (ICCC-3). Cancer 103(7):1457–1467

    Article  PubMed  Google Scholar 

  • Stiller C (2007) Childhood cancer in Britain: incidence, survival, mortality. Oxford University Press, Oxford

    Book  Google Scholar 

  • Virgone C, Cecchetto G, Ferrari A et al (2012) GATA-4 and FOG-2 expression in pediatric ovarian sex cord-stromal tumors replicates embryonal gonadal phenotype: results from the TREP project. PLoS One 7(9):e45914

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Virgone C, Cecchetto G, Alaggio R et al (2014) Appendiceal neuroendocrine tumors (carcinoid of the appendix) in childhood: a clinical report from the Italian TREP project. J Pediatr Gastroenterol Nutr 58(3):333–338

    Article  PubMed  Google Scholar 

  • Virgone C, Alaggio R, Dall’Igna P et al (2015a) Epithelial tumors of the ovary in children and teenagers: a prospective study from the Italian TREP project. J Pediatr Adolesc Gynecol 28(6):441–446

    Article  PubMed  Google Scholar 

  • Virgone C, Cecchetto G, Besutti V et al (2015b) Bowel parasitosis and neuroendocrine tumours of the appendix. A report from the Italian TREP project. Epidemiol Infect 143(7):1552–1555

    Article  CAS  PubMed  Google Scholar 

  • Weber ML, Schneider DT, Offenmüller S et al (2016) Pediatric colorectal carcinoma is associated with excellent outcome in the context of cancer predisposition syndromes. Pediatr Blood Cancer 63(4):611–617

    Article  PubMed  Google Scholar 

  • Worst BC, van Tilburg CM, Balasubramanian GP, al (2016). Next-generation personalised medicine for high-risk paediatric cancer patients—the INFORM pilot study. Eur J Cancer 65 91–101

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milan, Italy

    Andrea Ferrari

  2. SIREDO Oncology Center (Care, Innovation and Research for Children, Adolescents and Young Adults with Cancer), Institut Curie, PSL University, Paris, France

    Daniel Orbach

  3. Pediatric Hematology and Oncology Unit, University Hospital, Saint Denis, Paris, France

    Yves Reguerre

  4. Pediatric Hematology and Oncology, University of Tuebingen, Tuebingen, Germany

    Ines B. Brecht

  5. Klinik für Kinder- und Jugendmedizin, Clinic of Pediatrics, University Witten/Herdecke, Dortmund, Germany

    Dominik T. Schneider

  6. Department of Pediatric Surgery, Marciniak Hospital, Wroclaw, Wroclaw, Poland

    Jan Godzinski

  7. Department of Pediatric Oncology, Royal Manchester Children’s Hospital, Manchester, UK

    Bernadette Brennan

Authors
  1. Andrea Ferrari
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Daniel Orbach
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Yves Reguerre
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Ines B. Brecht
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Dominik T. Schneider
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Jan Godzinski
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Bernadette Brennan
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Andrea Ferrari .

Editor information

Editors and Affiliations

  1. Clinic of Pediatrics, Municipal Hospital Dortmund, University Witten-Herdecke, Dortmund, Germany

    Dominik T. Schneider

  2. Department of Hematology and Oncology, University Children’s Hospital, Tübingen, Baden-Württemberg, Germany

    Ines B. Brecht

  3. Aflac Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta and Emory University, Atlanta, GA, USA

    Thomas A. Olson

  4. Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Milano, Italy

    Andrea Ferrari

Rights and permissions

Reprints and permissions

Copyright information

© 2022 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Ferrari, A. et al. (2022). National Initiatives in Europe. In: Schneider, D.T., Brecht, I.B., Olson, T.A., Ferrari, A. (eds) Rare Tumors in Children and Adolescents. Pediatric Oncology. Springer, Cham. https://doi.org/10.1007/978-3-030-92071-5_5

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-92071-5_5

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-92070-8

  • Online ISBN: 978-3-030-92071-5

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation