Publications
Building local capacity for childhood cancer registration: real-world examples
Researchers from the International Agency for Research on Cancer (IARC), in collaboration with St. Jude Children’s Research Hospital (USA) and local partners in Georgia, Mexico, South Africa, and Viet Nam, report their findings on the development of childhood cancer registries after a 5-year implementation period. The summary of key commonalities and challenges was published in the journal JCO Global Oncology.
Activities in the four countries followed the Global Initiative for Cancer Registry Development (GICR) model, including the assessment of the situation, the development of meetings, and targeted support. The general and childhood cancer registration situation was assessed in each country across four domains: context, governance, procedures, and dissemination.
The results show that the scope, modalities, and coverage of cancer registration varied in important ways in the selected countries. Common challenges identified in cancer registration in all four countries included irregular financial support, instability in personnel, and difficulties in access and data sharing. These challenges affect registry sustainability and data quality. The authors conclude that surveillance of childhood cancer needs definitive support as a key component of the World Health Organization (WHO) Global Initiative for Childhood Cancer.
Piñeros M, Lam CG, Mery L, Znaor A, Steliarova-Foucher E, Abraham N, et al. Building local capacity for childhood cancer registration: real-world examples JCO Glob Oncol. Published online 6 January 2026; https://doi.org/10.1200/GO-25-00471
First population-based registry dedicated to childhood cancer registration in India
A population-based childhood cancer registry (PBCCR) was established in Chennai, India in 2022. The PBCCR closely collaborates with the Chennai population-based cancer registry, which has been operating since 1982, and with the Indian Pediatric Haematology Oncology Group. The PBCCR collects, in addition to the core variables, also several high-resolution data, such as stage and treatment. The barriers and enablers for implementing the registry were described in an article published in the journal Pediatric Blood and Cancer.
Radhakrishnan, V., Jothi, A., Mary, R., Veeraiah, S., Sudhakar, R., Selvam, P., Kothandan, B.T., Santana, V., Steliarova-Foucher, E., Bhakta, N. and Rajaraman, S. (2025), Assessment of Barriers and Enablers for Implementing a Population-Based Childhood Cancer Registry in Chennai, India. Pediatr Blood Cancer, 72: e31500; https://doi.org/10.1002/pbc.31500
Expanding the Global Capacity for Childhood Cancer Registration: The ChildGICR Masterclass
In a new article, published in the Journal of Clinical Oncology Global Oncology, we report on the development and successful implementation of the ChildGICR educational programme. The programme was initiated with the ChildGICR Masterclass which took place online during April–July 2021.
Teaching material on childhood cancer was developed in collaboration with 22 participants from 18 countries. In working groups, the participants created content for seven identified topics relevant to childhood cancer registries, which comprised burden, registration, classification, staging, data quality assessment, data analysis and data use.
Eleven Masterclass graduates later taught 88 professionals in 16 countries during three online courses in 2022 and 2023, disseminating thus the knowledge they acquired in the Masterclass.
Moreira DC, Znaor A, Santana VM, Dolya A, Fox-Irwin L, Bhakta N, Mery L; Steliarova-Foucher E. Expanding the Global Capacity for Childhood Cancer Registration: The ChildGICR Masterclass. JCO Glob Oncol, Published online 21 June 2024; https://doi.org/10.1200/GO.23.00334
Financial hardship in families of children or adolescents with cancer: a systematic literature review
In this review we synthesized the existing evidence of financial hardship of families that face cancer diagnosis in their child. The reviewed studies reported on different aspects of hardship, such as costs associated with treatment and costs of coping strategies.
The relatively fragmented evidence shows that irrespectively of the income level of the country, families experience financial hardship, albeit the measured elements of hardship differed somewhat between the countries according to their level of development. We also discussed the need for standard methodology and reporting.
Ritter J, Allen S, Cohen PD, Fajardo AF, Marx K, Loggetto P, Auste C, Lewis H, de Sá Rodrigues KE, Hussain S, Omotola A, Bolous NS, Thirumurthy H, Essue BM, Steliarova-Foucher E, Huang I-C, Meheus P, Bhakta N. Financial hardship in families of children or adolescents with cancer: a systematic literature review. Lancet Oncol, 2023;24(9):E364-E75; https://doi.org/10.1016/S1470-2045(23)00320-0