About Us

“If you work on frequent cancers, do randomized trials! If you work on rare cancers – FIND FRIENDS!”.

This is exactly the spirit that led to the foundation of the European Cooperative Study Group for Pediatric Rare Tumors – EXPeRT in June 2008, which is officially supported by the International Society of Peadiatric Oncology – Europe (SIOP Europe).

Children with very rare tumors have not benefited to the same extent from the enormous advances made in pediatric oncology. Indeed, it has become increasingly clear in recent years that there is a need to develop ad hoc strategies to fight Very Rare Tumors (VRT) of pediatric age. This is why several national groups specifically focusing on rare cancers in childhood have been founded in Italy, France, the UK, Poland, and Germany in the new millennium and joined forces in EXPeRT. These initiatives have contributed to increase awareness and improve knowledge, treatment, and outcome of rare pediatric tumors.

EXPeRT members can activate different levels of cooperation to achieve their goals, and to obtain dedicated funding by participating in EU-financed projects. Their experiences emphasize the merits of networking, seeking new partnerships, joining forces, and pooling resources to extend the reach of research efforts, and ultimately improve the quality of patient care.

Between 2014-2017, EXPeRT enhanced the knowledge on very rare pediatric tumors by exchanging data and performing analyses to develop evidence-based and internationally recognized guidelines and to enforce EXPeRT consultation thanks to the involvement in the European project called Expo-r-Net. This project was uniquely positioned to address healthcare inequalities for children and teenagers with cancer across Europe and develop innovative modalities for a better treatment, care, and expertise-sharing.

Since 2018, the EXPeRT members are active in establishing of the second European project called Pediatric Rare Tumors Network – European Registry (PARTNER). This project has the main purposes of building a European common registry of pediatric VRT, but also the major task of developing diagnostic and treatment guidelines for VRT (or at least part of them).

 

General info Subsection

The goals of EXPeRT were to empower research on pediatric VRT by promoting cooperation between the national groups behind its foundation, supporting the creation of other such groups elsewhere in Europe, and fostering international collaboration schemes with other networks further afield.

The EXPeRT’s founding members had several specific objectives to work on over the years. They aimed first to pool their national retrospective series of specific types of VRT to obtain series large enough to allow for them to examine risk-stratified treatment strategies. This would subsequently provide a frame for arriving at a consensus on treatment recommendations. Then, promoting research on pediatric VRT required the establishment of a structured organization. Moreover, EXPeRT wants to bundle expertise and to provide advice to physicians confronted with children with VRTs.

Coordinating group Subsection

 

Funding Members

  • Andrea Ferrari
  • Bernadette Brennan
  • Daniel Orbach
  • Dominik T. Schneider
  • Ewa Bien
  • Gianni Bisogno
  • Giovanni Cecchetto
  • Ines B. Brecht
  • Jan Godzinski
  • Teresa Stachowicz-Stencel
  • Yves Reguerre

 

EXPeRT Structure

Chair

Ines Brecht

Eberhard Karls Universitaet Tuebingen – Tuebingen, Germany

Co-coordinator of the German STEP (Seltene Tumoren in der Pädiatrie, Rare Tumor Committee) project

 

Vice Chair


Daniel Orbach

SIREDO Oncology Center (Care, Innovation and Research for Children and AYA with Cancer), PSL Research University, Institut Curie – Paris, France

French Group on Rare Tumors in Children (FRaCTurE; Groupe FRAnCais des TUmeurs Rares de l’Enfant) co-funder

 

Board Members

Andrea Ferrari

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

Italian TREP (Tumori Rari in Età Pediatrica, Rare Tumors in Pediatric Age) co-    chair

 

 

Gianni Bisogno

Pediatric Hematology-Oncology Division (pHOD), Department of Pediatrics, Padova University Hospital – Padua, Italy

Italian TREP (Tumori Rari in Età Pediatrica, Rare Tumors in Pediatric Age) co-chair ERN-PAEDCAN Partner: Paediatric Rare Tumours Network – PARTNER Project Coordinator

 

Dominik T. Schneider

Pediatrics Clinic, Dortmund Municipal Hospital, Dortmund, Germany

German STEP (Seltene Tumoren in der Pädiatrie, Rare Tumor Committee) co-chair

 

 

Ewa Bien

Department of Pediatrics, Hematology and Oncology, Medical University – Gdansk, Poland

Polish Pediatric Rare Tumors Study Group (PPRTSG) co-founder, co-chair

 

 

Nuno Jorge Dos Reis Farinha

Hospital Center of São João (CHSJ) – Porto,Portugal

 

 

 

 

Jan Godzinski

Department of Pediatric Surgery, Marciniak Hospital – Wroclaw, Poland

Polish Rare Pediatric Tumor Study Group (PPRSTG) co-chair

 

 

 

Tal Ben-Ami

Kaplan Medical Center in Rehovot – Rehovot, Israel

 

 

 

 

Yves Reguerre

Pediatric Hematology-Oncology Department, Centre Hospitalier Universitaire – Angers, France

French Group on Rare Tumors in Children (FRaCTurE; Groupe FRAnCais des TUmeurs Rares de l’Enfant), co-chair

 

 

Jelena Roganovic

Clinical Hospital Centre, Rijeka – Croatia

 

 

 

 

Calogero Virgone

Pediatric Surgery Unit, Department of Women’s and Children’s Health, Padova University-Hospital – Padua Italy

Italian TREP (Tumori Rari in Età Pediatrica, Rare Tumors in Pediatric Age) co-chair

 

 

Scientific Assistant Officer

 

Silvia Sorbara

Clinical Research Coordinator, Padova University Hospital, Department of Women’s and Children’s Health, Pediatric Hematology-Oncology Division (pHOD), Paediatric Clinical Trial Office – Padua Italy

Italian TREP (Tumori Rari in Età Pediatrica, Rare Tumors in Pediatric Age)  co-chair

 

Serena Mancini

Research Manager Coordinator, Padova University Hospital, Department of Women’s and Children’s Health, Pediatric Hematology-Oncology Division (pHOD), Research Management Office – Padua Italy
ERN-PAEDCAN Partner: Paediatric Rare Tumours Network – PARTNER Project Manager

 

Ordinary Members Subsection

Stefano Chiaravalli Fondazione IRCCS Istituto Nazionale Tumori, Milan, Italy Italian national cooperative study TREP (Tumori Rari in Età Pediatrica, Rare Tumors in Pediatric Age)
Bernadette Brennan Royal Manchester Children’s Hospital, United Kingdom United Kingdom’s Children’s Cancer & Leukaemia Group (UKCCLG)
Teresa Stachowicz-Stencel Department of Pediatrics, Hematology and Oncology Medical University, Gdansk, Poland Polish Rare Pediatric Tumor Study Group (PPRSTG)
Giovanni Cecchetto Pediatric Surgery, Department of Pediatrics, Padova University Hospital, Italy Italian national cooperative study TREP (Tumori Rari in Età Pediatrica, Rare Tumors in Pediatric Age)
Rodica Voichita COSNAROVICI Oncology Institute ”Prof.dr.Ion Chiricuta” Cluj-Napoca, Romania SROHP: Romanian Society of Pediatric Onco-Hematology
Monica Désirée Dragomir Institute of Oncology, Bucarest SROHP: Romanian Society of Pediatric Onco-Hematology
Ricardo Lopez Almaraz University Hospital of Cruces, Barakaldo-Bizkaia Spanish Society of Pediatric Hematology and Oncology (SEHOP)
Apostolos Pourtsidis Hellenic Society Pediatric Haematology Oncology Hellenic Society Pediatric Haematology Oncology
Gustaf Osterlundh Sahlgrenska University Hospital, Goteborg Sweden
Maja Cesen/Marko Kavčič University Medical Centre, Ljubljana Slovenia
Alexandra Kolenova University Children Hospital, Bratislava Slovakia
Jelena Rascon University Hospital Santariskiu Klinikos, Vilnius Lithuania
Kata Martinova University Children’s Hospital, Skopje Macedonia
Dragana Janic University Children Hospital, Belgrade Serbia
Malgorzata KRAWCZYK Department of Pediatrics, Hematology and Oncology Medical University, Gdansk, Poland Polish Rare Pediatric Tumor Study Group (PPRSTG)
Anna

SYNAKIEWICZ

Department of Pediatrics, Hematology and Oncology Medical University, Gdansk, Poland Polish Rare Pediatric Tumor Study Group (PPRSTG)
Michael Ost UNIVERSITÄTSKLINIKUM TÜBINGEN
Sabine Sarnacki Necker Enfants Malades Hospital French Group on Rare Tumors in Children (FRaCTurE; Groupe FRAnCais des TUmeurs Rares de l’Enfant)
Brice Fresneau Department of pediatric oncology, GUSTAVE ROUSSY French Group on Rare Tumors in Children (FRaCTurE; Groupe FRAnCais des TUmeurs Rares de l’Enfant)
Martin Ebinger Pediatric Hematology and Oncology, University Children’s Hospital

Tübingen, Germany

German Rare Tumor Committee (STEP; Seltene Tumoren in der Pädiatrie)
Kontny, Udo Aaden, Germany German Rare Tumor Committee (STEP; Seltene Tumoren in der Pädiatrie)
Hippert Felicitas Klinikum Dortmund, Kinderklinik German Rare Tumor Committee (STEP; Seltene Tumoren in der Pädiatrie)
Peter Vorwerk Magdeburg German Rare Tumor Committee (STEP; Seltene Tumoren in der Pädiatrie)
Samuele Naviglio Pediatric Hematology-Oncology, Institute for Maternal and Child

Health IRCCS “Burlo Garofolo”, Trieste, Italy

Italy
Terwisscha van Scheltinga Prinsesmaxima Centrum The Netherlands
Bajciova Viera BRNO The Czech Republic
Miranda Dierselhuis Prinsesmaxima Centrum The Netherlands
Monika Sparber-Sauer Klinikum Stuttgart, Olgahospital Cooperative Weichteilsarkomstudiengruppe (CWS)
Sam Behjati Wellcome Sanger Institute, UK Cambridge University Hospitals NHS

Foundation Trust, UK

CCLG
Luca Bergamaschi Istituto Nazionale Tumori Milano TREP
Konrad Haug Pediatric Hematology and Oncology, University Children’s Hospital

Tübingen, Germany

German Rare Tumor Committee (STEP; Seltene Tumoren in der Pädiatrie)
Kuhlen Michaela Augsburg, Germany German Rare Tumor Committee (STEP; Seltene Tumoren in der Pädiatrie)
Hans Christiansen Hannover, Germany German Rare Tumor Committee (STEP; Seltene Tumoren in der Pädiatrie)