A virtual consultation system for very rare tumors in children and adolescents – an initiative of the European Cooperative Study Group in Rare Tumors in Children (EXPeRT)
Background: Very rare tumors (VRTs) in children and adolescents are orphan diseases defined by an annual incidence of <2/1000,000. For a long time, VRTs have been outside of clinical and research groups in the field of pediatric oncology. As a result, exchange of experience and development of the...
| Main Authors: | , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2024-06-01
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| Series: | EJC Paediatric Oncology |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2772610X23001356 |
| _version_ | 1797374129056251904 |
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| author | Dominik T. Schneider Andrea Ferrari Daniel Orbach Calogero Virgone Yves Reguerre Jan Godzinski Ewa Bien Jelena Roganovic Nuno Reis Farinha Tal Ben-Ami Teresa Stachowicz-Stencel Tabea Blessing Antje Redlich Apostolos Pourtsidis Kris Ann P. Schultz Ines B. Brecht Gianni Bisogno |
| author_facet | Dominik T. Schneider Andrea Ferrari Daniel Orbach Calogero Virgone Yves Reguerre Jan Godzinski Ewa Bien Jelena Roganovic Nuno Reis Farinha Tal Ben-Ami Teresa Stachowicz-Stencel Tabea Blessing Antje Redlich Apostolos Pourtsidis Kris Ann P. Schultz Ines B. Brecht Gianni Bisogno |
| author_sort | Dominik T. Schneider |
| collection | DOAJ |
| description | Background: Very rare tumors (VRTs) in children and adolescents are orphan diseases defined by an annual incidence of <2/1000,000. For a long time, VRTs have been outside of clinical and research groups in the field of pediatric oncology. As a result, exchange of experience and development of therapeutic standards have not been promoted. After the foundation of several national VRT working groups and the European Cooperative Study Group on Pediatric Rare Tumors (EXPeRT), a virtual consultation system (VCS) has been established, which specifically aimed at facilitating access to clinical consultation in complicated cases of VRTs. Methods: The VCS has been open to physicians. After initial registration, they can present VRT patients free of charge. Patient consent and data pseudonymization were mandatory. Within the VCS, disease specific interdisciplinary panel discussions with at least three experts from the EXPeRT group and partners have been opened, and at the end of the discussion, a written summary and recommendation was provided. Results: Between Mai 2017 and March 2023, 160 cases from 27 countries (20 European, 7 non-European) have been discussed in the VCS. The most common diagnoses were adrenocortical carcinoma, malignant skin tumors and malignant ovarian tumors. In a survey three months after panel discussion, more than 90% of requesting physicians evaluated the VCS to be easy to use, helpful and to have a significant impact on patient management. Conclusion: A VCS may provide significant assistance in the management of children and adolescents with VRTs. Furthermore, it may help to overcome inequalities in access to adequate treatment in countries with lower health care system resources or without established VRT study groups. Therefore, EXPeRT will continue to support the VCS. For this purpose, the VRT panels have been integrated into the Clinical Patient Management System (CPMS) within the European Reference Network Initiative (ERN PAedCan). |
| first_indexed | 2024-03-08T19:00:24Z |
| format | Article |
| id | doaj.art-f8238ed80f0344d38345f67c73645da6 |
| institution | Directory Open Access Journal |
| issn | 2772-610X |
| language | English |
| last_indexed | 2024-03-08T19:00:24Z |
| publishDate | 2024-06-01 |
| publisher | Elsevier |
| record_format | Article |
| series | EJC Paediatric Oncology |
| spelling | doaj.art-f8238ed80f0344d38345f67c73645da62023-12-28T05:20:11ZengElsevierEJC Paediatric Oncology2772-610X2024-06-013100137A virtual consultation system for very rare tumors in children and adolescents – an initiative of the European Cooperative Study Group in Rare Tumors in Children (EXPeRT)Dominik T. Schneider0Andrea Ferrari1Daniel Orbach2Calogero Virgone3Yves Reguerre4Jan Godzinski5Ewa Bien6Jelena Roganovic7Nuno Reis Farinha8Tal Ben-Ami9Teresa Stachowicz-Stencel10Tabea Blessing11Antje Redlich12Apostolos Pourtsidis13Kris Ann P. Schultz14Ines B. Brecht15Gianni Bisogno16University Witten/Herdecke, Germany; Clinic of Pediatrics, Dortmund Municipal Hospital, Germany; Correspondence to: Klinik für Kinder, und Jugendmedizin, Beurhausstr. 40, D-44137 Dortmund, Germany.Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, ItalySIREDO Oncology Center (Care, Innovation and Research for Children, Adolescents and Young Adults with cancer), Institut Curie, PSL University, Paris, FrancePediatric Surgery, Department of Women's and Children's Health, Padova University Hospital, ItalyPediatric Hematology-Oncology Department, Centre Hospitalier Universitaire, Saint Denis, FranceDepartment of Pediatric Surgery, Marciniak Hospital, Wroclaw, Poland; Department of Pediatric Traumatology and Emergency Medicine, Wroclaw Medical University, PolandDepartment of Pediatrics, Hematology and Oncology, Medical University, Gdansk, PolandDepartment of Pediatrics, Clinical Hospital Centre Rijeka, Rijeka, CroatiaPediatric Oncology Unit, Hospital S. João, Porto, PortugalPediatric Hematology Unit, Kaplan Medical Center, Rehovot, IsraelDepartment of Pediatrics, Hematology and Oncology, Medical University, Gdansk, PolandUniversity Witten/Herdecke, Germany; Clinic of Pediatrics, Dortmund Municipal Hospital, GermanyPediatric Hematology and Oncology, Children’s Hospital, University of Magdeburg, Dortmund, GermanyPediatric and Adolescent Oncology Clinic Children's Hospital MITERA, Athens, GreeceCancer and Blood Disorders, Children’s Minnesota, Minneapolis, MN, USAPediatric Hematology and Oncology, Children’s Hospital, Eberhard-Karls-Universitaet Tuebingen, GermanyDepartment of Women’s and Children’s Health, University of Padua, Padua, Italy; Pediatric Hematology Oncology Division, University Hospital of Padua, Padua, ItalyBackground: Very rare tumors (VRTs) in children and adolescents are orphan diseases defined by an annual incidence of <2/1000,000. For a long time, VRTs have been outside of clinical and research groups in the field of pediatric oncology. As a result, exchange of experience and development of therapeutic standards have not been promoted. After the foundation of several national VRT working groups and the European Cooperative Study Group on Pediatric Rare Tumors (EXPeRT), a virtual consultation system (VCS) has been established, which specifically aimed at facilitating access to clinical consultation in complicated cases of VRTs. Methods: The VCS has been open to physicians. After initial registration, they can present VRT patients free of charge. Patient consent and data pseudonymization were mandatory. Within the VCS, disease specific interdisciplinary panel discussions with at least three experts from the EXPeRT group and partners have been opened, and at the end of the discussion, a written summary and recommendation was provided. Results: Between Mai 2017 and March 2023, 160 cases from 27 countries (20 European, 7 non-European) have been discussed in the VCS. The most common diagnoses were adrenocortical carcinoma, malignant skin tumors and malignant ovarian tumors. In a survey three months after panel discussion, more than 90% of requesting physicians evaluated the VCS to be easy to use, helpful and to have a significant impact on patient management. Conclusion: A VCS may provide significant assistance in the management of children and adolescents with VRTs. Furthermore, it may help to overcome inequalities in access to adequate treatment in countries with lower health care system resources or without established VRT study groups. Therefore, EXPeRT will continue to support the VCS. For this purpose, the VRT panels have been integrated into the Clinical Patient Management System (CPMS) within the European Reference Network Initiative (ERN PAedCan).http://www.sciencedirect.com/science/article/pii/S2772610X23001356Childhood cancerVery rare tumorsOrphan diseaseVirtual consultation systemTumor board |
| spellingShingle | Dominik T. Schneider Andrea Ferrari Daniel Orbach Calogero Virgone Yves Reguerre Jan Godzinski Ewa Bien Jelena Roganovic Nuno Reis Farinha Tal Ben-Ami Teresa Stachowicz-Stencel Tabea Blessing Antje Redlich Apostolos Pourtsidis Kris Ann P. Schultz Ines B. Brecht Gianni Bisogno A virtual consultation system for very rare tumors in children and adolescents – an initiative of the European Cooperative Study Group in Rare Tumors in Children (EXPeRT) EJC Paediatric Oncology Childhood cancer Very rare tumors Orphan disease Virtual consultation system Tumor board |
| title | A virtual consultation system for very rare tumors in children and adolescents – an initiative of the European Cooperative Study Group in Rare Tumors in Children (EXPeRT) |
| title_full | A virtual consultation system for very rare tumors in children and adolescents – an initiative of the European Cooperative Study Group in Rare Tumors in Children (EXPeRT) |
| title_fullStr | A virtual consultation system for very rare tumors in children and adolescents – an initiative of the European Cooperative Study Group in Rare Tumors in Children (EXPeRT) |
| title_full_unstemmed | A virtual consultation system for very rare tumors in children and adolescents – an initiative of the European Cooperative Study Group in Rare Tumors in Children (EXPeRT) |
| title_short | A virtual consultation system for very rare tumors in children and adolescents – an initiative of the European Cooperative Study Group in Rare Tumors in Children (EXPeRT) |
| title_sort | virtual consultation system for very rare tumors in children and adolescents an initiative of the european cooperative study group in rare tumors in children expert |
| topic | Childhood cancer Very rare tumors Orphan disease Virtual consultation system Tumor board |
| url | http://www.sciencedirect.com/science/article/pii/S2772610X23001356 |
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