Scientific Papers



G. Vassal, M. Schrappe, et al., The SIOPE Strategic Plan: A European Cancer Plan for Children and Adolescents, SIOPE, Brussels, Belgium (presented at European Cancer Congress 2015 and SIOP Congress 2015)

R. Ladenstein, M. Schrappe, K. Pritchard-Jones, Gilles Vassal, et al, ENCCA – European Activities and Achievements with Potential Interest Outside of Europe, SIOP Congress 2015


R. Ladenstein, M. Schrappe, K. Pritchard-Jones, Gilles Vassal, et al, Major Achievements of the European Network for Cancer Research in Children and Adolescents, SIOP Congress 2014

V Segura , A Alspach A, A Di Cataldo A, et al., Non High-Risk Neuroblastoma  European  Strategy: SIOPEN LINES Protocol Implementation, Challenges, and Achievements, Congress 'Advances in neuroblastoma research', Koln, Germany, May 2014

Segura V, Schleiermacher G, Ambros P, Di Cataldo A, Bermúdez J et al., LINES as a paradigm of risk-adapted therapies using prognostic biomarkers: a SIOPEN trial, Congress 'European CanCer Congress' 2013, Amsterdam, The Netherlands, September 2013

Segura V, Alspach A, Di Cataldo A, et al., LINES: European low and intermediate risk neuroblastomoa (a SIOPEN study), International symposium 'Paediatric Cancer Research at the INTERFACE', Vienna, Austria, June 2013

F. Rifatbegovic, A.Weinhäusel, et al., Does the handling of blood and bone marrow affect the gene expression of disseminated neuroblastoma cells?, Children’s Cancer Research Institute, Tumor Biology Group, Vienna, Austria

I.M. Ambros, C. Brunner et al., Genomic background of neuroblastomas with intra-tumor heterogeneity of MYCN amplification, Children’s Cancer Research Institute, Tumor Biology Group, Vienna, Austria.


ENCCA Abstracts presented at SIOP Congress 2014 (Toronto, CA):

NameType of pres.Title
Project Coordinator
Ruth Ladenstein
Poster presentation'Major achievements of the European Network for Cancer research in Children and Adolescents (ENCCA)'
Martin Schrappe
Poster presentation'Improved therapeutic strategies using predictive biomarkers in paediatric ALL: An activity within the EU network ENCCA to introduce newly discovered molecular information into clinical practice'
Adela Cañete Nieto
Poster presentation'How the European Clinical Trial Directive impacts trial implementation: LINES, on behalf of SIOPEN cooperative Group'
Arun Atreiya Rangaswami, Piotr Czauderna
Oral presentation'Development of a novel web-based consultation service for a paediatric rare tumor: The SIOPEL Clinician Online Consultation Service'
Riccardo Haupt, Chiara Dellacasa, Sabine Karner, Leontien Kremer, Christophe Bergeron, Silvia Caruso, Davide Saraceno, Roderick Skinner, Vera Morsellino, Lars Hjorth
e-poster'The Survivorship Passport for long-term care of childhood cancer survivors. An  initiative of the European Network for research on Cancer in Children and Adolescents (ENCCA)'
Richard Feltbower
Poster presentation

1. 'Are we looking in the right place? A study of time to diagnosis of cancer in children and young adults within Yorkshire secondary care services', C Lethaby, SE Kinsey, SV Picton, M van Laar, R Phillips, RG Feltbower.

2. 'Missing data and survival analysis of central nervous system tumours amongst children and adolescents in Yorkshire, UK, 1990-2009', M van Laar, DC Greenwood, DP Stark, RG Feltbower.

Jean-Claude Dupont
Poster and oral presentation1. Oral presentation in the ICCCPO program: 'Nothing about you without you!: Parents´ and Patients´ views on clinical trials and bio-banks. Results from the EU-FP7 ENCCA project, and lessons for the future'
2. Poster: 'Working together on ethics: Ethical deliberations involving professionals as well as patients´ and parents´ representatives. Lessons and Results from the EU-FP7 ENCCA project'

Scientific Articles:


6 March 2016: K. Pritchard-Jones et al., Evidence for a delay in diagnosis of Wilms’ tumour in the UK compared with Germany: implications for primary care for children, Arch Dis Child doi:10.1136/archdischild-2015-309212

18 January 2016: H. Kovar et al., The second European interdisciplinary Ewing sarcoma research summit – A joint effort to deconstructing the multiple layers of a complex disease, Oncotarget, Advance Publications 2016, pp. 1-12


21 December 2015: J. Carretier, et al. A Review of Health Behaviors in Childhood and Adolescent Cancer Survivors: Toward Prevention of Second Primary Cancer, Journal of Adolescent and Young Adult Oncology (JAYAO)

15 December 2015:
Piotr Czauderna et al., The Children's Hepatic tumors International Collaboration (CHIC): Novel global rare tumor database yields new prognostic factors in hepatoblastoma and becomes a research model, EJC, January 2016, Volume 52, Pages 92–101

10 December 2015: Rebora P, Galimberti S, Valsecchi MG, Using multiple timescale models for the evaluation of a time-dependent treatment, Stat Med. 34(28), pp 3648-60

26 November 2015: D. Hayn, Piloting the European Patient Identity Management (EUPID) concept to facilitate Secondary Use of Neuroblastoma Data from Clinical Trials and Biobanking, Abstracts of the 4th Neuroblastoma Research Symposium

November 2015: Koumakis, L.; Potamias, G.; Marias, K.; Tsiknakis, M., An algorithmic approach for the effect of transcription factor binding sites over functional gene regulatory networks, in Bioinformatics and Bioengineering (BIBE), 2015 IEEE 15th International Conference on , vol., no., pp.1-6, 2-4 Nov. 2015, doi: 10.1109/BIBE.2015.7367662

26 October 2015: DP Bernasconi, P Rebora, S Iacobelli, MG Valsecchi, L Antolini, Survival Probabilities with Time Dependent Treatment Indicator: Quantities and Non-Parametric Estimators, Statistics in Medicine, 1097-0258

1 October 2015: M. S. Isakoff, S. S. Bielack, P. Meltzer, R. Gorlick, Osteosarcoma: Current Treatment and a Collaborative Pathway to Success,  Journal of Clinical Oncology, 33 (28)

26 September 2015, G. Vassal et al., The SIOPE Strategic Plan, A European Cancer Plan for Children and Adolescents

11 September 2015: F. Rifatbegovic, M. R. Abbasi, S. Taschner-Mandl, M. Kauer, A. Weinhäusel2, R. Handgretinger, P. F. Ambros, Enriched Bone Marrow Derived Disseminated Neuroblastoma Cells Can Be a Reliable Source for Gene Expression Studies—A Validation Study, Plos One,  doi:10.1371/journal.pone.0137995

July 2015: L. Hjorth et al., 'Survivorship after childhood cancer: PanCare: A European Network to promote optimal long-term care', EJC, Volume 51, Issue 10, Pages 1203–1211

18 June 2015: 'Architecture for an Advanced Biomedical Collaboration Domain for the European Paediatric Cancer Research Community (ABCD-4-E)', Michael Nitzlnader, Markus Falgenhauer, Christian Gossy, Günter Schreier, Studies in Health Technology and Informatics, Volume 212: eHealth2015 – Health Informatics Meets eHealth

18 June 2015: 'Standardized Data Sharing in a Paediatric Oncology Research Network – A Proof-of-Concept Study' , Nina Hochedlinger, Michael Nitzlnader, Markus Falgenhauer, Stefan Welte, Dieter Hayn, Lefteris Koumakis, George Potamias, Manolis Tsiknakis, Davide Saraceno, Eugenia Rinaldi, Ruth Ladenstein, Günter Schreier, Studies in Health Technology and Informatics
Volume 212: eHealth2015 – Health Informatics Meets eHealth, 27-34

June 2015: E. Steliarova-Foucher et al., 'Registration of childhood cancer: Moving towards pan-European coverage?', EJC, Volume 51, Issue 9, Pages 1064-1079

6 April 2015: N. Hochedlinger, Standardisierter Datenaustausch in medizinischen Forschungsnetzwerken mit Anwendung in der pädiatrischen Onkologie, Master Thesis, Graz University of Technology

April 2015: M Izzo, G Arnulfo, MC Piastra, V Tedone, L Varesio, MM Fato, XTENS – A JSON-based Digital Repository for Biomedical Data Management, Bioinformatics and Biomedical engineering,
Volume 9044, pp 123-130

21 March 2015: Rota,  M., Antolini, L., & Valsecchi, M.G., Optimal cut-point definition in biomarkers: the case of censored failure time outcome, BMC Med Res Methodol. 15(1), pp 24-34


31 December 2014: A. D. Jakes, P Marec-Berard, R. S. Phillips, D. P. Stark,, J Adolesc Young Adult Oncol. 2014 Dec 1;3(4):144-152,

27 November 2014: G. Vassal et al., Creating a unique, multi-stakeholder Paediatric Oncology Platform to improve drug development for children and adolescents with cancer, European Journal of Cancer, doi:

October 2014: M. R. Abbasi, R. Ladenstein, I. M. Ambros, P. F. Ambros, Bone marrows from neuroblastoma patients: An excellent source for tumor genome analyses, Molecular Oncology, doi:10.1016/j.molonc.2014.10.010

September 2014:

12 August 2014: I. M. Ambros, C. Brunner, R. Abbasi, C. Frech and P. F. Ambros, Ultra-high density SNParray in neuroblastoma molecular diagnostics, Front Oncol. 2014; 4: 202. doi: 10.3389/fonc.2014.00202

July 2014:

24 June 2014: M. Wilhelm, D. Stark et al., ENCCA WP17-WP7 consensus paper on teenagers and young adults (TYA) with bone sarcomas, Annals of Oncology, 00: 1–, 2014, doi:10.1093/annonc/mdu153

June 2014: M. Nitzlnader, G. Schreier, Patient Identity Management for Secondary Use of Biomedical Research Data in a Distributed Computing Environment, eHealth2014 – Health Informatics Meets eHealth, doi:10.3233/978-1-61499-397-1-211

19 May 2014: P. Rebora , M. G. Valsecchi, Survival estimation in two-phase cohort studies with application to biomarkers evaluation, Statistical Methods in Medical Research, Doi: 10.1177/0962280214534411

6 May 2014: M Izzo, F Mortola, G Arnulfo, MM Fato, L Varesio, A digital repository with an extensible data model for biobanking and genomic analysis management, BMC Genomics, 2014, 15 (Suppl 3):S3, pp 1-15


1 May 2014: J. K. Anninga et al., Workshop report on the 2nd Joint ENCCA/EuroSARC European bone sarcoma network meeting: integration of clinical trials with tumour biology, Clinical Sarcoma Research 2014, 4:4

6 April 2014: D Cangelosi, M Muselli, S Parodi, F Blengio, P Becherini, R Versteeg, M Conte, Luigi Varesio, Use of Attribute Driven Incremental Discretization and Logic Learning Machine to build a prognostic classifier for neuroblastoma patients, BMC Bioinformatics, 2015, 15 (suppl 5):S4, pp 1-15

3 March 2014: Nitzlander M., Konzept eines IHE-basierten Medizinischen Forschungsnetzwerkes in der Cloud, Master Thesis, UMIT Private University of Health Sciences, Medical Informatics and Technology

7 February 2014: S Pillozzi, B Accordi, P Rebora et al., Differential expression of hERG1A and hERG1B genes in pediatric acute lymphoblastic leukemia identifies different prognostic subgroups, Leukemia (2014) 28, 1352–1355, Doi: 10.1038/leu.2014.26

1 February 2014: C. Kennedy et al. on behalf of the PNET4 study group of the SIOPE Brain Tumour Group, Quality of Survival and Growth in Children and Young Adults in the PNET4 European Controlled Trial of Hyperfractionated Versus Conventional Radiation Therapy for Standard-Risk Medulloblastoma, Interntional Journal of Radiation Oncology, Volume 88, Issue 2, Pages 292–300

February 2014: P. Czauderna et al., Hepatoblastoma state of the art: pathology, genetics, risk stratification, and chemotherapy, Curr Opin Pediatr., 2014 Feb;26(1):19-28. doi: 10.1097/MOP.0000000000000046

February 2014: R. L. Meyers et al., Hepatoblastoma state of the art: pre-treatment extent of disease, surgical resection guidelines and the role of liver transplantation, Current Opinion in Pediatrics Vol. 26/Issue 1 Lippincott Williams and Wilkins doi: 10.1097/MOP.0000000000000042


January 2014: P. Czauderna et al., The treatment of hepatoblastoma: Its evolution and the current status as per the SIOPEL trials, Journal of Indian Association of Pediatric Surgeons Vol. 19/Issue 4 Medknow Publications and Media Pvt. Ltd Indi, doi: 10.4103/0971-9261.142001

January 2014: E. Steliarova Foucher, L. Frazier, Childhood Cancer, in World Cancer Report 2014 (an IARC monograph), pp. 69-76


23 December 2013: A. van der Veer, M. Zaliova et al., IKZF1 status as a prognostic feature in BCR-ABL1-positive childhood ALL, Blood 2013 Oct 10;122(15):2622-9

2 December 2013: J. Kowalczyk, Towards reducing inequalities: European Standards of Care for Children with Cancer, European Journal of Cancer, Volume 50, Issue 3 , Pages 481-485

December 2013: Di Giulio P, Arnfield A, English MW, Fitzgerald E, Kelly D, Jankovic M, and Gibson F. 'Collaboration between doctors and nurses in children’s cancer care: insights from a European project', European Journal Oncology Nursing 17(6):745-9

14 November 2013: C. Kennedy, K. Bull, M. Chevignard et al., Quality of Survival and Growth in Children and Young Adults in the PNET4 European Controlled Trial of Hyperfractionated Versus Conventional Radiation Therapy for Standard-Risk Medulloblastoma, on behalf of the, PNET4 study group of SIOPE Brain Tumour Group, Int J Radiation Oncol Biol Phys, Vol. 88, No. 2, pp. 292-300,


31 October 2013: A. Laprie, A. K. LaMarre, D. A. Haas-Kogan, 1 February 2014, Hyperfractionation: Fractious or Not?,Editorial, Int J Radiation Oncol Biol Phys, Vol. 88, No. 2, pp. 269-271, 


18 October 2013: M Zaliova et al., ERG deletion is associated with CD2 and attenuates the negative impact of IKZF1 deletion in childhood acute lymphoblastic leukemia, Leukemia (2014) 28, 182–185; doi:10.1038/leu.2013.282


6 September 2013: D. L.-Terrada, R. Alaggio, M. T. de Dávila, P. Czauderna et al., Towards an international pediatric liver tumor consensus classification: proceedings of the Los Angeles COG liver tumors symposium, Modern Pathology (2013), 1–20

12 September 2013: R. Franca, P. Rebora, E. Athanasakis et al., TNF-α SNP rs1800629 and risk of relapse in childhood acute lymphoblastic leukemia: relation to immunophenotype, Future Medicine Ltd, Vol. 15/Issue  5, pp. 619-627, Doi: 10.2217/pgs.13.249


16 July 2013: M. Rota, L. Antolini, Finding the optimal cut-point for Gaussian and Gamma distributed biomarkers, Computational Statistics and Data Analysis 69 (2014) 1–14


28 May 2013: S. Chiaretti, A. Vitale, G. Cazzaniga et al., Clinico-biologic features of 5202 acute lymphoblastic leukemia patients enrolled in the Italian AIEOP and GIMEMA Protocols and stratified in age-cohorts, Haematologica, 2013 doi 10.3324/haematol.2012.080432

12 April 2013: C. Palmi, M.G. Valsecchi, G. Longinotti et al.,  What is the relevance of Ikaros gene deletions as prognostic 1 marker in pediatric 2 Philadelphia negative B-cell precursor acute lymphoblastic leukemia?, Haematologica, doi: 10.3324/haematol.2012.075432


April 2013S. Bielack, B. Kempf-Bielack, T. Von Kalle et al., Controversies in childhood osteosarcoma, Minerva Pediatr 65(2):125-148, 2013)


20 February 2013: R. Sullivan, J. R. Kowalczyk et al., New policies to address the global burden of childhood cancers,The Lancet Oncology, pp. 125-135, doi: 10.1016/S1470-2045(13)70007-X


20 February 2013: K. Pritchard-Jones et al., Sustaining innovation and improvement in the treatment of childhood cancer: lessons from high-income countries, The Lancet Oncology, doi:10.1016/S1470-2045(13)70010-X


20 February 2013: G. Vassal et al., New drugs for children and adolescents with cancer: the need for novel development pathways, The Lancet Oncology, doi:10.1016/S1470-2045(13)70013-5


20 February 2013: I. Magrath, E. Steliarova-Foucher, et al., Paediatric cancer in low-income and middle-income countries, The Lancet Oncology, doi: 10.1016/S1470-2045(13)70008-1


11 February 2013: S. Galimberti, M. G. Valsecchi, Multivariate permutation test to compare survival curves for matched data, BMC Medical Research Methodology, 13:16, doi:10.1186/1471-2288-13-16


28  January 2013: L.Bastian, J. Hof, M. Pfau et al., Synergistic antileukemic activity of bortezomib and HDACis in preclinical models of B cell precursor – ALL via modulation of the p53, p53, PI3K/AKT and NF-κB, Clinical Cancer Research, 2012 doi:10.1158/1078-0432.CCR-12-1511


21 January 2013: M. Ezzalfani et al.: Dose-finding designs using a novel quasi-continuous endpoint for multiple toxicities, Stat Med. 2013 Jan 21. doi: 10.1002/sim.5737

January 2013: R Bellazzi, A Dagliati, F Licciulli, P Romano, L Varesio, M Cannataro, Concepts in IT solutions for integrating clinical and molecular data  to support nbiomedical research: from biobanks to knowledge repositories, ACM SIGBioinformatics Record, Volume 3 Issue 1, pp 18-21



1 December 2012: P. Czauderna, R. Meyers, E. Hiyama et al.: Childrens's hepatoma international collaboration (CHIC): novel inititative creating a global retrospective clinical database and an international risk stratification system: experience of the ENCCA consortium,Pediatr. Blood Cancer 2012; vol. 59, nr 6, s. 987


1 December 2012: D. Lopez-Terrada, S. Ranganathan, R. Allagio et al., Development and validation of a revisited international classification of hepatoblastoma (HBL), hepatocellular carcinoma (HCC) and transitional liver tumours (TLT) in children: a proposal from the International Paediatric Liver Pathology Expert Committee from COG, GPOH, JPLT and SIOPEL Groups, after Los Angeles Symposium and Paris Workshop in 2011, Pediatr. Blood Cancer 2012; vol. 59, nr 6, s. 986


December 2012: Franca R. et al., Glutathione S-transferase homozygous deletions and relapse in childhood acute lymphoblastic leukemia: a novel study design in a large Italian AIEOP cohort, Pharmacogenomics. 2012 Dec;13(16):1905-16. doi: 10.2217/pgs.12.169


30 September 2012: Rebora P., Galimberti S., Sample size calculation for recurrent events data in one-arm studies, Pharm Stat. 2012 Nov-Dec;11(6):494-502. doi: 10.1002/pst.1541. Epub 2012 Sep 30

July 2012: Billingham L, Small sample sizes in clinical trials: a statistician’s perspective, Clinical Investigation (2012) 2(7), 655-57, doi: 10.4155/cli.12.62


13 June 2012: S. Krentz et al., Prognostic value of genetic alterations in children with first bone marrow relapse of childhood B-cell precursor acute lymphoblastic leukemia, Leukemia 2012. doi: 10.1038/leu.2012.155


June 2012: Bagnasco F. et al., Risk of repeated febrile episodes during chemotherapy-induced granulocytopenia in children with cancer: a prospective single center study, J Chemother. 2012 Jun;24(3):155-60. doi: 10.1179/1973947812Y.0000000002


29 May 2012:  H. Kovar et al., The First European Interdisciplinary Ewing Sarcoma Research Summit, Frontiers in Paediatric Oncology, 2012


8 May 2012: Deley MC et al., Taking the long view: how to design a series of Phase III trials to maximize cumulative therapeutic benefit, Clin Trials. 2012 Jun;9(3):283-92. doi: 10.1177/1740774512443430


May 2012: L. Koumakis et al., Coupling Regulatory Networks and Microarays: Revealing Molecular Regulations of Breast Cancer Treatment Responses, Lecture Notes in Computer Science 7297: 239-246 (2012)

February 2012: C. Seerainer et al., HL7 CDA R2 Based Document Sharing in Biomedical Research: Design of a Severe Adverse Event (SAE) Report Document, European Journal for Biomedical Informatics


December 2011: L. Antolini, M.G. Valsecchi, Performance of binary markers for censored failure time outcome: nonparametric approach based on proportions, Stat Med, December 2011


September 2011:  D. M. Thomas, M. Wilhelm, A.-M. Cleton-Jansen, S. Bielack: Workshop Report on the European Bone Sarcoma Networking Meeting: Integration of Clinical Trials with Tumor Biology, Journal of Adolescent and Young Adult Oncology, September 2011


10 August 2011: J. Hof et al.: Mutations and Deletions of the TP53 Gene Predict Nonresponse to Treatment and Poor Outcome in First Relapse of Childhood Acute Lymphoblastic Leukemia, J Clin Oncol/ 29/, 3185-3193, doi: 10.1200/JCO.2011.34.8144