Rebecca Landy, Gregory W Haber, Barry I Graubard, Carole Fakhry, Nicole G Campos, Emily A Burger, Li C Cheung, Hormuzd A Katki, Maura L Gillison, Anil K Chaturvedi
{"title":"Impact of screening for HPV-positive oropharyngeal cancers: a microsimulation-based modeling study","authors":"Rebecca Landy, Gregory W Haber, Barry I Graubard, Carole Fakhry, Nicole G Campos, Emily A Burger, Li C Cheung, Hormuzd A Katki, Maura L Gillison, Anil K Chaturvedi","doi":"10.1093/jnci/djaf033","DOIUrl":"https://doi.org/10.1093/jnci/djaf033","url":null,"abstract":"Background We estimated the impact of screening on morbidity and mortality of HPV16-positive oropharyngeal cancer among US men aged 45-79 years. Methods We developed an individual-level, state-transition natural history microsimulation model to estimate the impact of screening using oral HPV16 detection, HPV16-E6 antibody detection, and transcervical-ultrasound of neck/oropharynx. We compared clinical detection to counterfactual screen detection for cancer stage, single- vs multiple-modality treatment, and survival. Screening scenarios encompassed four progression speeds across cancer stages (very-slow, slow, fast, and very-fast) and four screening frequencies. Results Among US men aged 45-79 years in 2021 (N = 54,881,311), 163,958 clinically diagnosed HPV-positive oropharyngeal cancers and 32,009 deaths would occur through age 84 in the absence of screening. Assuming very-fast progression, 4%, 20%, 31%, and 60% of these cancers would be detected by one-off, 5-yearly, 3-yearly, and annual screening. Annual screening (very-fast progression) could reduce the number of cancers diagnosed at advanced stages (AJCC 7, Stages III/IV: 90.0% with no screening vs 59.1%) and treated by multiple-modalities (80.6% with no screening vs 50.6%). Cancer mortality would also be reduced by 36.2%, with a gain of 106,000 life-years. Annual screening would have a number needed to screen (NNS) of 561 per screen-detected cancer, 1,118 per additional cancer treated by single-modality, 4,740 per death prevented, and 520 per life-year gained; such high NNS reflect potential inefficiency of population-level screening. Conclusions If proven efficacious in randomized trials and cost-effective, screening for HPV-positive oropharyngeal cancers could provide considerable population-level reductions in advanced stage cancers, treatment-related morbidities, and mortality.","PeriodicalId":501635,"journal":{"name":"Journal of the National Cancer Institute","volume":"29 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143258399","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Luca Arecco, Eva Blondeaux, Marco Bruzzone, Grazia Arpino, Carmine De Angelis, Michelino De Laurentiis, Roberta Caputo, Alessandra Fabi, Valeria Sanna, Stefania Gori, Fabio Puglisi, Luca Boni, Simone Nardin, Irene Giannubilo, Marta Perachino, Roberto Borea, Elisa Agostinetto, Evandro de Azambuja, Matteo Lambertini, Lucia Del Mastro
{"title":"Prognostic implications of risk definitions from the monarchE and NATALEE trials","authors":"Luca Arecco, Eva Blondeaux, Marco Bruzzone, Grazia Arpino, Carmine De Angelis, Michelino De Laurentiis, Roberta Caputo, Alessandra Fabi, Valeria Sanna, Stefania Gori, Fabio Puglisi, Luca Boni, Simone Nardin, Irene Giannubilo, Marta Perachino, Roberto Borea, Elisa Agostinetto, Evandro de Azambuja, Matteo Lambertini, Lucia Del Mastro","doi":"10.1093/jnci/djaf031","DOIUrl":"https://doi.org/10.1093/jnci/djaf031","url":null,"abstract":"Background The monarchE and NATALEE trials employed different high-risk inclusion criteria. Main objective is to assess prognostic differences based on their inclusion criteria. Methods Patients with hormone receptor-positive/HER2-negative early breast cancer enrolled in the phase III MIG1, GIM2, and GIM3 trials were categorized as high-risk cohort (HRC) and low-risk cohort (LRC) according to the inclusion criteria of monarchE and NATALEE trials. Subsequently, they were further classified in three different cohorts concordant LRC (low-risk for both trials), discordant risk cohort (high-risk for only one trial), and concordant HRC (high-risk for both trials). Main outcomes were disease-free survival (DFS) and overall survival (OS). Results Among 4,795 patients included, 1,343 (28.0%) and 2,689 (56.1%) were classified as HRC according to the monarchE and NATALEE, respectively.","PeriodicalId":501635,"journal":{"name":"Journal of the National Cancer Institute","volume":"40 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-02-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143191925","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Response to Oleribe","authors":"Paul Riviere, James D Murphy, Lucas K Vitzthum","doi":"10.1093/jnci/djaf020","DOIUrl":"https://doi.org/10.1093/jnci/djaf020","url":null,"abstract":"We would like to thank Dr Oleribe for their interest in the study, “Predicting Persistent Opioid Use, Abuse, and Toxicity Among Cancer Survivors”. In the critical appraisal, the author concludes that there is an increased rate of persistent opioid use among Black veterans because the proportion of veterans with persistent opioid use who were Black was higher than the proportion of African American veterans on a census bureau report of veterans. While we appreciate the author’s investigation into potential racial disparities in adverse opioid outcomes, we do not agree with their methodology and do not believe the data supports their conclusion.","PeriodicalId":501635,"journal":{"name":"Journal of the National Cancer Institute","volume":"121 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143072485","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Maureen E Canavan, Sarah Westvold, Valerie Csik, Jeffrey Franks, Gabrielle Rocque, Cary P Gross, Kerin B Adelson
{"title":"The association between clinical trial participation, drug costs, and performance in the Oncology Care Model (OCM)","authors":"Maureen E Canavan, Sarah Westvold, Valerie Csik, Jeffrey Franks, Gabrielle Rocque, Cary P Gross, Kerin B Adelson","doi":"10.1093/jnci/djaf008","DOIUrl":"https://doi.org/10.1093/jnci/djaf008","url":null,"abstract":"It has long been assumed that academic oncology practices are disadvantaged in value-based payment programs, due to patient complexity and research costs. This assumption not been tested. The Oncology Care Model (OCM) was a Medicare alternative payment model, which sought to curb costs while improving care. We assessed the impact of clinical trial (CT) participation on two outcomes: 1. cost and 2. practice performance among three participating NCI designated cancer centers using a random effects meta-analysis. The mean total Medicare cost per episode was $42,225 for CT episodes and $34,937 for non-CT episodes. Despite higher total costs, CT episodes were more likely to be under spending targets than non-CT episodes (odds ratio 0.37 (CI 0.25, 0.48). Drug costs in CT episodes were lower than in non-CT episodes, although this was only statistically significant at the largest volume practice. In conclusion, CTs may offer an advantage in value-based programs.","PeriodicalId":501635,"journal":{"name":"Journal of the National Cancer Institute","volume":"21 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143020490","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ioannis Zerdes, Panagiotis Filis, Georgios Fountoukidis, Ali Inan El-Naggar, Foteini Kalofonou, Antonio D’Alessio, Athanasios Pouptsis, Theodoros Foukakis, George Pentheroudakis, Johan Ahlgren, Daniel Smith, Antonios Valachis
{"title":"Comprehensive Genome Profiling for Treatment Decisions in Patients with Metastatic Tumors: Real-World Evidence Meta-Analysis and Registry Data Implementation","authors":"Ioannis Zerdes, Panagiotis Filis, Georgios Fountoukidis, Ali Inan El-Naggar, Foteini Kalofonou, Antonio D’Alessio, Athanasios Pouptsis, Theodoros Foukakis, George Pentheroudakis, Johan Ahlgren, Daniel Smith, Antonios Valachis","doi":"10.1093/jnci/djaf015","DOIUrl":"https://doi.org/10.1093/jnci/djaf015","url":null,"abstract":"Background Although precision oncology has rapidly been developed in recent years, its real-world impact and challenges in healthcare implementation remain underexplored. Through a meta-analysis of real-world evidence (RWE), we aimed at investigating the applicability and clinical impact of comprehensive cancer genome profiling (CGP) in cancer patients with metastatic solid tumors. Methods We systematically searched Medline, Embase, and Web of Science for RWE studies on CGP and matched therapies in metastatic solid tumors (publication period: 2012—2023). Pooled proportions of actionable genomic alterations, patients treated with matched targeted therapies, treatment, and survival outcomes were calculated. Data from Swedish cancer registries were used as a case-study for nationwide CGP implementation. Results Out of the 7218 identified studies, 144 were included in our analysis. 59.8% of CGP-tested patients had actionable genomic alterations, with 15.6% (95% Confidence Interval (CI) 13.4-18.2%) of them having received targeted therapy. Objective response was seen in 23.9% (95% CI 20.8-27.3%). Overall, CGP-guided treatment was correlated with prolonged progression-free survival (pooled Hazard Ratio (HR) = 0.63; 95% CI, 0.56-0.70; 18 studies) and overall survival (pooled HR = 0.60; 95% CI, 0.51-0.70; 21 studies) when compared to conventional treatment. Meta-regression time projections analyses showed that these rates will steadily increase by 2030. Conclusions Pooled analyses of RWE studies indicate that approximately one-fourth of the patients receiving CGP-matched treatment have an objective response. By utilizing meta-regression projections, our nationwide cancer registry case-study offers insights into the potential of precision oncology for patients with metastatic cancer and to inform future healthcare strategies.","PeriodicalId":501635,"journal":{"name":"Journal of the National Cancer Institute","volume":"17 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143020489","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nobuhiko Kanaya, Waleed Seddiq, Kok-Siong Chen, Yoshinori Kajiwara, Lucia Moreno Lama, Paulo Borges, Shinji Kuroda, Hiroaki Wakimoto, Khalid Shah
{"title":"Engineered allogeneic stem cells orchestrate T lymphocyte driven immunotherapy in immunosuppressive leptomeningeal brain metastasis","authors":"Nobuhiko Kanaya, Waleed Seddiq, Kok-Siong Chen, Yoshinori Kajiwara, Lucia Moreno Lama, Paulo Borges, Shinji Kuroda, Hiroaki Wakimoto, Khalid Shah","doi":"10.1093/jnci/djaf006","DOIUrl":"https://doi.org/10.1093/jnci/djaf006","url":null,"abstract":"Background Immune-checkpoint inhibitors have shown clinical benefit in non-small cell lung cancer (NSCLC) derived brain metastasis (BM), however, their efficacy in lung to leptomeningeal brain metastasis (LLBM) remains poor. Methods A paired matched RNA expression dataset of patients with NSCLCs and BMs was analyzed to idenfiy BM specific suppressive tumor microenvironment (TME) features. Next, we created immune-competent LLBM mouse models that mimic clinical LLBM. We evaluated the efficacy of intrathecal (IT) delivery of allogeneic stem cells (SCs) engineered to release single-chain variable fragment anti-PD-1 (scFvPD-1). To enhance tumor cell killing and subsequent modulation of the immune TME, we explored the therapeutic activity of dual SCs releasing oncolytic herpes simplex virus (oHSV) and scFvPD-1 and profiled immune and metabolic consequences. Results RNA sequencing analysis of primary NSCLCs and BMs revealed an immune-suppressive TME with reduced immune cells and increased PD-1+ T cells in BMs. We showed significantly decreased immune cells and increased PD-1+ T cells in the TME of LLBM compared to primary NSCLC tumors in LLBM mouse tumor models. Next, we showed that locoregional IT treatment with SC releasing scFvPD-1, but not conventional systemic injection of anti-PD-1 antibody, suppressed tumor growth and improved survival in our immune-competent LLBM models. Furthermore, dual SCs releasing oHSV and scFvPD-1 (SC-oHSV/scFvPD-1) enhanced therapeutic outcomes by inducing oHSV-mediated immunogenic cell death, activating anti-tumor T cell signaling, and disrupting oxidative phosphorylation, which sensitized tumors to cisplatin. Conclusion Locoregional delivery of SC-oHSV/scFvPD-1 effectively targets the immune-suppressive TME in LLBM, providing a promising strategy for treating LLBM.","PeriodicalId":501635,"journal":{"name":"Journal of the National Cancer Institute","volume":"105 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-01-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142991999","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Mortality after cancer diagnosis among children with congenital heart disease in Denmark and Sweden.","authors":"Christina-Evmorfia Kampitsi,Line Kenborg,Hanna Mogensen,Olof Broberg,Ingrid Glimelius,Friederike Erdmann,Jeanette Falck Winther,Maria Feychting,Giorgio Tettamanti","doi":"10.1093/jnci/djaf010","DOIUrl":"https://doi.org/10.1093/jnci/djaf010","url":null,"abstract":"BACKGROUNDRecent decades have witnessed tangible improvements in childhood cancer survival. However, the prognosis for children with congenital heart disease (CHD), the most prevalent birth defect, remains unclear. Due to improved survival of CHD and childhood cancer, evaluating outcomes within this intersection is important for clinical practice. We aimed to assess mortality post-cancer diagnosis among children with CHD.METHODSWe conducted a study on the population of Denmark and Sweden, born 1970-2014, with a cancer diagnosis before age 20 in the national cancer registers (end of follow-up 2015; n = 20,665). CHD diagnoses (n = 397) and recorded deaths were retrieved from national health registers. We evaluated the effect of CHD on five-year mortality post-cancer diagnosis fitting Cox proportional hazards regression.RESULTSWhen excluding children with Down syndrome, children with CHD had a higher five-year mortality post-cancer diagnosis compared to children without (HR 1.48, 95% CI 1.18-1.86). This was particularly notable in children with lymphoma (HR 2.17, 95% CI 1.11-4.25) and neuroblastoma (HR 2.39, 95% CI 1.11-5.15). In more recent decades (post-1990), children with CHD had similar five-year mortality as their counterparts without, except for children diagnosed with lymphoma, where mortality remained elevated (HR 3.37, 95% CI 1.65-6.89).CONCLUSIONSIn this large, register-based cohort study, children with CHD fared worse post-cancer diagnosis-particularly lymphoma and neuroblastoma. While a more positive trend emerged in recent years, lymphoma-related mortality remained disproportionately high among children with CHD, underscoring the need for continued research and interventions to improve outcomes for this vulnerable group.","PeriodicalId":501635,"journal":{"name":"Journal of the National Cancer Institute","volume":"10 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142988522","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pietro Scilipoti, Hans Garmo, Rolf Gedeborg, David Robinson, Pär Stattin, Marcus Westerberg
{"title":"Incidence and prognostic implications of PSA persistence and relapse after radical prostatectomy. Population-based study","authors":"Pietro Scilipoti, Hans Garmo, Rolf Gedeborg, David Robinson, Pär Stattin, Marcus Westerberg","doi":"10.1093/jnci/djaf012","DOIUrl":"https://doi.org/10.1093/jnci/djaf012","url":null,"abstract":"Background There has been a wide range in incidence of prostate-specific antigen (PSA) persistence and relapse after radical prostatectomy (RP) for prostate cancer (PCa). We aimed to describe incidence and prognostic implications of PSA persistence and relapse. Methods Register-based cohort study in Sweden of men diagnosed with PCa between 2007 and 2020 who underwent RP. Risks were estimated using competing risk cumulative incidence curves. Treatment after persistence or relapse and risk of PCa death and other causes were stratified according to persistence, European Association of Urology relapse risk groups, time to relapse, and life expectancy based on age and comorbidities. Results Among 10,700 men, the 10-year risk of PSA persistence or relapse after RP was 34% (95% CI, 32-35%). Within 12 months of persistence/relapse, 75% of men with persistence, high-risk relapse or early relapse (<2 years) received treatment. The 10-year risk of PCa death ranged from 12% for men with persistence to 2% in men with low-risk relapse, while death from other causes ranged from 11% to 16%. Risk of PCa death was 8.5% after early relapse (<2 years) and 1.4% after late relapse (>5 years). Conclusions This population-based study estimated that one third of men would have PSA persistence or relapse within 10 years from RP. There was a wide range in risk of death from PCa according to cancer characteristics and time to relapse. Risk of death from other causes was substantial. These factors, along with life expectancy, should inform treatment decisions for men with persistence or relapse.","PeriodicalId":501635,"journal":{"name":"Journal of the National Cancer Institute","volume":"55 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142988890","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Karen M Tuesley, Katrina Spilsbury, Sallie-Anne Pearson, Peter Donovan, Andreas Obermair, Michael D Coory, Sitwat Ali, Nirmala Pandeya, Louise Stewart, Susan J Jordan, Penelope M Webb
{"title":"Long-acting, progestin-based contraceptives and risk of breast, gynecological, and other cancers","authors":"Karen M Tuesley, Katrina Spilsbury, Sallie-Anne Pearson, Peter Donovan, Andreas Obermair, Michael D Coory, Sitwat Ali, Nirmala Pandeya, Louise Stewart, Susan J Jordan, Penelope M Webb","doi":"10.1093/jnci/djae282","DOIUrl":"https://doi.org/10.1093/jnci/djae282","url":null,"abstract":"Background Use of long-acting, reversible contraceptives has increased over the past 20 years, but an understanding of how they could influence cancer risk is limited. Methods We conducted a nested case-control study among a national cohort of Australian women (n = 176 601 diagnosed with cancer between 2004 and 2013; 882 999 matched control individuals) to investigate the associations between the levonorgestrel intrauterine system, etonogestrel implants, depot-medroxyprogesterone acetate and cancer risk and compared these results with the oral contraceptive pill. We used conditional logistic regression to estimate odds ratios (OR) and 95% confidence intervals (CI). Results Levonorgestrel intrauterine system and etonogestrel implant use was associated with breast cancer risk (OR = 1.26, 95% CI = 1.21 to 1.31, and OR = 1.24, 95% CI = 1.17 to 1.32, respectively), but depot-medroxyprogesterone acetate was not, except when used for 5 or more years (OR = 1.23, 95% CI = 0.95 to 1.59). Reduced risks were seen for levonorgestrel intrauterine system (≥1 years of use) in endometrial cancer (OR = 0.80, 95% CI = 0.65 to 0.99), ovarian cancer (OR = 0.71, 95% CI = 0.57 to 0.88), and cervical cancer (OR = 0.62, 95% CI = 0.51 to 0.75); for etonogestrel implant in endometrial cancer (OR = 0.21, 95% CI = 0.13 to 0.34) and ovarian cancer (OR = 0.76, 95% CI = 0.57 to 1.02); and for depot-medroxyprogesterone acetate in endometrial cancer (OR = 0.21, 95% CI = 0.13 to 0.34). Although levonorgestrel intrauterine system, etonogestrel implant and depot-medroxyprogesterone acetate were all associated with increased cancer risk overall, for etonogestrel implant, the risk returned to baseline after cessation, similar to the oral contraceptive pill. We were unable to adjust for all potential confounders, but sensitivity analyses suggested that adjusting for parity, smoking, and obesity would not have materially changed our findings. Conclusion Long-acting, reversible contraceptives have similar cancer associations to the oral contraceptive pill (reduced endometrial and ovarian cancer risks and short-term increased breast cancer risk). This information may be helpful to women and their physicians when discussing contraception options.","PeriodicalId":501635,"journal":{"name":"Journal of the National Cancer Institute","volume":"3 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142974781","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Gonçalo Forjaz, Betsy Kohler, Michel P Coleman, Eva Steliarova-Foucher, Serban Negoita, Jaime M Guidry Auvil, Fernanda Silva Michels, Johanna Goderre, Charles Wiggins, Eric B Durbin, Gijs Geleijnse, Marie-Charlotte Henrion, Candice Altmayer, Thomas Dubois, Lynne Penberthy
{"title":"Making the Case for an International Childhood Cancer Data Partnership","authors":"Gonçalo Forjaz, Betsy Kohler, Michel P Coleman, Eva Steliarova-Foucher, Serban Negoita, Jaime M Guidry Auvil, Fernanda Silva Michels, Johanna Goderre, Charles Wiggins, Eric B Durbin, Gijs Geleijnse, Marie-Charlotte Henrion, Candice Altmayer, Thomas Dubois, Lynne Penberthy","doi":"10.1093/jnci/djaf003","DOIUrl":"https://doi.org/10.1093/jnci/djaf003","url":null,"abstract":"Childhood cancers are a heterogeneous group of rare diseases, accounting for less than 2% of all cancers diagnosed worldwide. Most countries, therefore, do not have enough cases to provide robust information on epidemiology, treatment, and late effects, especially for rarer types of cancer. Thus, only through a concerted effort to share data internationally will we be able to answer research questions that could not otherwise be answered. With this goal in mind, the U.S. National Cancer Institute and the French National Cancer Institute co-sponsored the Paris Conference for an International Childhood Cancer Data Partnership in November 2023. This meeting convened more than 200 participants from 17 countries to address complex challenges in pediatric cancer research and data sharing. This Commentary delves into some key topics discussed during the Paris Conference and describes pilots that will help move this international effort forward. Main topics presented include: 1) the wide variation in interpreting the European Union's General Data Protection Regulation among Member States; 2) obstacles with transferring personal health data outside of the European Union; 3) standardization and harmonization, including common data models; and 4) novel approaches to data sharing such as federated querying and federated learning. We finally provide a brief description of three ongoing pilot projects. The International Childhood Cancer Data Partnership is the first step in developing a process to better support pediatric cancer research internationally through combining data from multiple countries.","PeriodicalId":501635,"journal":{"name":"Journal of the National Cancer Institute","volume":"47 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-01-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142968218","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}