The Nordic ChiCaP Network: An interdisciplinary approach to childhood cancer predisposition

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. • Nordic ChiCaP Netwok gathers experts on childhood cancer predisposition. • Advance ChiCaP knowledge via interdisciplinary collaboration. • Nordic ChiCaP enhances knowledge, early diagnosis, patient care & family support. • Seven WGs: Discovery, Surveillance, Epidemiology, ELP, CMMRD, TP53, PhD/Postdoc. • NordicChiCaP.org shares ChiCaP research, WG details, members & network articles.

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Journal
Rare
Published
2025-01-01
DOI
https://doi.org/10.1016/j.rare.2025.100111
Primary Topic
Childhood Cancer Survivors' Quality of Life
Type
article
Field-Weighted Citation Impact
0.00

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article

The Nordic ChiCaP Network: An interdisciplinary approach to childhood cancer predisposition

Kristiina Nordfors, Alexandra Wachtmeister, Hildegunn Høberg‐Vetti, Joakim Wille et al.
Rare
Childhood Cancer Survivors' Quality of Life
article

The Nordic ChiCaP Network: An interdisciplinary approach to childhood cancer predisposition

Kristiina Nordfors, Alexandra Wachtmeister, Hildegunn Høberg‐Vetti, Joakim Wille, Bianca Tesi, Fulya Taylan, Emma Tham, Ulrik Kristoffer Stoltze, Katja Ekholm, Laura S. Korhonen, Svetlana Bajalica‐Lagercrantz, Anna Poluha, Ekaterina Kuchinskaya, Saara Nolvi, Stefan Becker, Giorgio Tettamanti, Carolina Maya‐González, Thale Kristin Olsen, Lauge Sørensen, Teresia Wangensteen, Gustaf Ljungman, Sonja Strang‐Karlsson, Kristina Lagerstedt‐Robinson, Maria K. Haanpää, Åsa Grauman, Ann Nordgren, Kjeld Schmiegelow, Kirsi Jahnukainen, Ayo Wahlberg, Andreina Kero, Monica Cheng Munthe‐Kaas, Hanne C. Lie, Karin Wadt, Otto Jul Nielsen, Joel Janhonen, Sara Orrsjö, P Cairns, Alexander Sun Zhang, Bushra Ishaq, Ida Katrine Knapstad, Andreas Benneche
article en

Abstract

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. • Nordic ChiCaP Netwok gathers experts on childhood cancer predisposition. • Advance ChiCaP knowledge via interdisciplinary collaboration. • Nordic ChiCaP enhances knowledge, early diagnosis, patient care & family support. • Seven WGs: Discovery, Surveillance, Epidemiology, ELP, CMMRD, TP53, PhD/Postdoc. • NordicChiCaP.org shares ChiCaP research, WG details, members & network articles.

RareVol. 3
Uppsala University (SE), Oslo University Hospital (NO), Karolinska University Hospital (SE), University of Helsinki (FI), University of Turku (FI), University of Oslo (NO), Helsinki University Hospital (FI), Haukeland University Hospital (NO), Turku University Hospital (FI), Copenhagen University Hospital (DK), Rigshospitalet (DK), Karolinska Institutet (SE), Helsinki Children's Hospital (FI), Kuopio University Hospital (FI), VID Specialized University (NO), Institute for Molecular Medicine Finland (FI), Linköping University Hospital (SE)
European Commission
Openalex Percentile: Top 56%
Childhood Cancer Survivors' Quality of Life
DOIOpen Access PDFOpenAlex
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