A1 Refereed original research article in a scientific journal
The Nordic ChiCaP Network: An interdisciplinary approach to childhood cancer predisposition
Authors: Taylan, Fulya; Janhonen, Joel; Ekholm, Katja; Bajalica-Lagercrantz, Svetlana; Becker, Stefan; Benneche, Andreas; Cairns, Patrick; Grauman, Åsa; Haanpää, Maria; Nielsen, Ole Haubjerg; Vetti, Hildegunn Høberg; Sørensen, Lauge Holm; Ishaq, Bushra; Jahnukainen, Kirsi; Kero, Andreina; Knapstad, Ida Katrine; Korhonen, Laura S.; Kuchinskaya, Ekaterina; Lagerstedt-Robinson, Kristina; Lie, Hanne C.; Ljungman, Gustaf; Maya-González, Carolina; Nolvi, Saara; Nordfors, Kristiina; Olsen, Thale Kristin; Orrsjö, Sara; Poluha, Anna; Schmiegelow, Kjeld; Stoltze, Ulrik Kristoffer; Strang-Karlsson, Sonja; Zhang, Alexander Sun; Tesi, Bianca; Tettamanti, Giorgio; Tham, Emma; Wachtmeister, Alexandra; Wadt, Karin A. W.; Wahlberg, Ayo; Wangensteen, Teresia; Wille, Joakim; Munthe-Kaas, Monica Cheng; Nordgren, Ann
Publisher: Elsevier B.V.
Publication year: 2025
Journal: Rare
Article number: 100111
Volume: 3
eISSN: 2950-0087
DOI: https://doi.org/10.1016/j.rare.2025.100111
Publication's open availability at the time of reporting: Open Access
Publication channel's open availability : Open Access publication channel
Web address : https://doi.org/10.1016/j.rare.2025.100111
Self-archived copy’s web address: https://research.utu.fi/converis/portal/detail/Publication/505587828
Testing for Childhood Cancer Predisposition (ChiCaP) syndromes is increasingly common in pediatric oncology as early identification can help adapt treatment and initiate surveillance. As such, ChiCaP testing can have medical, ethical, and psychological consequences for both the patients and their families, and present significant diagnostic challenges for pediatric oncologists. In response to these new opportunities and challenges, the Nordic ChiCaP Network was established in 2021, bringing together experts from pediatric and adult oncology, clinical genetics, molecular genetics, bioinformatics, epidemiology, psychology, anthropology, community medicine, law and ethics. Its primary goal is to advance our knowledge of ChiCaP in pediatric oncology research and care through an interdisciplinary approach. The network aims to achieve several key objectives: (1) to improve ChiCaP diagnostics, including gene-associated phenotypes and variant interpretation; (2) to advance understanding of the natural history, cancer risks, adverse treatment reactions, and comorbidities associated with ChiCaP syndromes; (3) to optimize and harmonize treatment protocols and surveillance strategies for affected patients and their families; (4) to address the ethical, legal and psychosocial aspects involved in testing, communication and counseling, diagnosing ChiCaP syndromes, and the impacts of surveillance on patients and their families; (5) to identify novel ChiCaP syndromes and explore their underlying mechanisms; and (6) to facilitate translation of research findings into clinical practice. By gathering interdisciplinary expertise and fostering collaboration across the Nordic countries, the Nordic ChiCaP Network will enhance knowledge and awareness of ChiCaP, improve early diagnosis, patient care, family support, and contribute to a better understanding of these complex genetic conditions.
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Funding information in the publication:
The Nordic ChiCaP Network did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. The Danish nation-wide research program Childhood Oncology Network Targeting Research, Organisation & Life expectancy (CONTROL) was supported by the Danish Cancer Society (R-257-A14720) and the Danish Childhood Cancer Foundation (2019–5934 and 2020–5769) and the PREDiSPOSED - Population-based Retro- & prospective Evaluation of Diagnostic Sequencing for Pediatric & Onco-genetic Syndromes’ Early Detection” study was supported by the Innovation Fund Denmark (2077–00024 A). The Finnish PeCCaPS study was supported by AAMU Pediatric Cancer Foundation, Cancer Society of South-West Finland, Finnish Pediatric Research Foundation, The Finnish Medical Foundation, Väre Foundation for Pediatric Cancer Research. The Norwegian PROTECT study was supported by the Norwegian Childhood Cancer Society (210001), and the Norwegian Cancer Society (273371). The Swedish Genomic Medicine Sweden Childhood Cancer Predisposition project was supported by grants from the Swedish Childhood Cancer Fund (PR2022-0027), Swedish Research Council (2021-2860), the Swedish Cancer Society (22 2057 PJ), the Cancer Society of Stockholm (211293), the Cancer Research Funds of Radiumhemmet (201052), Hållsten Research Foundation, Berth von Kantzow Foundation, and Region Stockholm (grant number: 51024).
