Epidemiology, Outcomes, Economics & Management in Oncology Group
EOEMOG research activity encompasses research at population level (RORENO and RON) and hospital level (IPOP) and in several areas of knowledge, meeting the level of challenges that health systems face globally and assuming that the management of health care health should have a strong component of clinical results (Value-Based Health Care). Thus, the group has contributed to increase the knowledge about the epidemiology of cancer, including geographic distribution of incidence, influence of socioeconomic determinants, assessment of the impact of the disease on the population by quantifying the global burden of disease. In addition, the group has produced knowledge in the areas of management, health outcomes and health care economics.
SCIENTIFIC COORDINATOR
Maria José Bento, MD, PhD
ORCID ID/ Ciência ID: 0000-0002-7690-9830 / 2A1A-1FCE-F83E
Senior Consultant in Public Health
Head of Department of Epidemiology at IPO-Porto
Coordinator of the Portuguese National Cancer Registry
Email: mjbento@ipoporto.min-saude.pt
TEAM
Senior Investigators
Ana Filipa Gonçalves, PhD
ORCID ID/ Ciência ID: 0000-0003-4962-3260 / 4E1E-3BC4-6DA3
Cancer registrar / Data manager
Email: ana.goncalves@ipoporto.min-saude.pt
Junior Researchers
Luísa Lopes-Conceição, PhD
ORCID ID/ Ciência ID: 0000-0002-5064-9911 / B912-6BD5-D2C8
E-mail: luisa.conceicao@ipoporto.min-saude.pt
Teresa Monjardino, PhD
ORCID ID/ Ciência ID: 0000-0003-4944-3366 / FE17-375E-777F
E-mail: teresa.monjardino@ipoporto.min-saude.pt
Invited Researchers
Joana Moreira, MSc
ORCID ID/ Ciência ID: 0009-0009-0357-5137 / 3D18-0F4F-C586
Statistician
IQVIA
E-mail: i38014@ipoporto.min-saude.pt
PhD Students
Carlos Matos, MSc
ORCID ID/ Ciência ID: 0000-0003-1134-0396 / 2619-ED62-0978
E-mail: cmdmatos@arsnorte.min-saude.pt
Mariana Pinto de Sousa, MSc
Ciência ID: 151A-5FC2-8034 / FCT Research Grant: UI/BD/154828/2023
E-mail: marianapsousa07@gmail.com
Débora Abreu, MSc
ORCID ID/ Ciência ID: 0000-0002-0531-4047 / A113-1238-5DF2
E-mail: up201304244@edu.fpce.up.pt
Other collaborators:
Ana Catarina Alves Rodrigues, MD MSc
ORCID ID / Ciência ID: 0009-0004-3034-4530 / 8018-881D-7BDE
Physician in Public Health
E-mail: ana.a.rodrigues@ipoporto.min-saude.pt
Ana Sofia Oliveira, BSc
Ciência ID: 4C1F-9CAC-E47F
Management Technician
E-mail: ana.oliveira@ipoporto.min-saude.pt
Ana Sofia Teixeira da Silva, BSc
ORCID ID/ Ciência ID: 0009-0005-5815-682X / C316-FA1F-00E6
Management Technician
E-mail: ana.t.silva@ipoporto.min-saude.pt
Cláudia Teixeira; MSc
ORCID ID / Ciência ID: 0000-0002-9139-090X / 9B17-E7C0-CDA4
Cancer registrar / Data manager
E-mail: i12918@ipoporto.min-saude.pt
José Taveira-Barbosa, MSc
ORCID ID / Ciência ID: 0009-0005-3645-8296 / 6B1B-1544-1C6F
Cancer registrar / Data manager
E-mail: i12918@ipoporto.min-saude.pt
Marta Rangel, BSc
Ciência ID: 5D13-1785-2D17
Management Technician
E-mail: marta.rangel@ipoporto.min-saude.pt
Pedro Leite-Silva, MSc
ORCID ID/ Ciência ID: 0000-0001-7015-242X / 8F1A-B281-8B8E
Statistician
E-mail: pedro.silva@ipoporto.min-saude.pt
Rita Calisto, MSc
ORCID ID/ Ciência ID: 0000-0002-5151-5245 / 231E-FA55-2A54
Statistician
E-mail: rita.silva.calisto@ipoporto.min-saude.pt
Teresa Mota Garcia, MD MSc
ORCID ID / Ciência ID: 0000-0003-4452-4140 / CB1C-62D4-54C6
Physician in Public Health
E-mail: teresa.garcia@ipoporto.min-saude.pt
Virgínia Sousa, MSc
ORCID ID/ Ciência ID: 0000-0001-5650-5401 / 191F-91F9-13BC
Management Technician
E-mail: virginia.sousa@ipoporto.min-saude.pt
AIMS
The group intends to have a local and global impact on health care by incorporating a multidisciplinary perspective in the production of knowledge in the following areas:
– Cancer epidemiology, including cancer etiology and socioeconomic determinants;
– Clinical epidemiological research into predictive and prognostic factors of patient survival;
– Health care management, outcome research and health economics.
Being CI-IPOP a department of the Portuguese Oncology Institute of Porto, the role of GEREGO in these areas can be leveraged by strong integration with clinical practice.
In the future, the group aims to increase national and international partnerships in projects, support observational studies and publish and communicate.
PROJECTS WITH EXTERNAL FUNDING
ONCOVALUE; Implementing value-based oncology care at European cancer hospitals: An AI-based framework for assessing real-life effectiveness of novel cancer therapies in real-time; EU; 424 434.75 € (2022-2026); Johanna Mattson – HUS Helsinki University Hospital (PI) & Luisa Lopes-Conceição (co-lead of WP4)
The ONCOVALUE consortium aims to unlock the full potential of Real-World Data and Real-World Evidence to maintain the affordability and sustainability of the healthcare system or the treatment of cancer.
The project aims to increase the capabilities of European cancer hospitals to easily and quickly collect, harmonize and analyze high-quality Real-World Data in real-time and by developing an AI-based framework. These resources and tools will allow the effective use of data and quality frameworks, for the continuous development of treatments, improvement of results, and support the health regulatory and health technology assessment (HTA) bodies to adopt RWD-driven methodologies in their decision-making on cost-effectiveness of novel cancer therapies.
CO(r)RECT Me; Metastatic COloREctal Cancer Treatment Pathway; LPCC; 13 500 € (2024-2025); Teresa Monjardino (PI) & Dânia Marques (PI)
Survival of patients diagnosed with metastatic colorectal cancer (mCRC) varies widely across the EU. The protocols for mCRC are highly variable and decided by multidisciplinary teams. Therefore, a thorough analysis of clinical practices among EU countries may be of interest to start analyzing differences in outcomes. The CO(r)RECT Me project bring together a team from different European countries to study differences in clinical outcome and to evaluate correlation with the pathway of cure and additional emerging variables.
ISCCP; Incidence and survival for childhood cancer in Portugal from 2010-2020: a nationwide population-based study; ; LPCC; 15 000 € (2024-2025); Teresa Monjardino (PI)
The primary objective of this study is to analyze childhood cancer incidence and survival rates and trends for the period 2010-2020, in Portugal, by sex, age, cancer site and region. As secondary objective we will evaluate the risk of multiple cancers in a cohort of patients. With this project we hope to obtain point estimates and updated temporal trends of childhood cancer incidence and survival. These indicators are decisive for planning and implementation of cancer prevention and control strategies.
RISK; New mRNA signatures as risk markers in cancers triggered by tobacco smoking; FCT; EXPL/SAU-PUB/1073/2021; 50 000 € (overall budget) (2021-2023); Isabel Pereira Castro (PI) & Maria José Bento (co-PI)
RISK aims to identify, validate and explore the potential of new risk markers and therapeutic targets (mRNA signatures diagnostic kit and mRNA vectors) to be used in patients with lung, bladder, and head and neck cancer. Overall, this project will advance current knowledge on mechanisms of disease, will provide new tobacco risk markers and will open novel opportunities for therapeutic intervention to be used in a clinical setting.
CancerCOV; The impact of the COVID-19 pandemic on the diagnosis, treatment and survival of cancer patients; FCT; EXPL/SAU-EPI/1606/2021; 49 538.10 € (overall budget) (2022-2024); Luisa Lopes-Conceição (PI) & Samantha Morais (co-PI)
This project aims to study the impact of the COVID-19 pandemic on the diagnosis, care and survival of cancer patients from IPO-Porto throughout the pandemic, by comparing 3 periods, covering the 3 waves after the outbreak began in Portugal.
Immunotherapy in recurrent/metastatic head and neck cancer: real-world data from six European countries; DIGICORE; 11 572.66 € (2022-2023); Rita Calisto (PI) & Claudia Vieira (co-PI)
In the last decade, several randomized controlled trials (RCTs) supported the use of anti-PD-1 (programmed cell death protein 1) agents in advanced squamous cell carcinoma of the head and neck (HNSCC) in first and further lines, improving overall survival (OS) compared to standard of care. Nevertheless, the results of RCTs may not be entirely generalized to the real-world population due to the stringent inclusion criteria and the rigid schedule of visits and exams. Real-world data (RWD) may overcome the limits imposed by rigorous design of RCTs and unlock key insights, including those related to underrepresentation in clinical trials. This study aims to describe and compare characteristics and treatments of real-world patients with recurrent or metastatic HNSCC, among seven participating centers in six European countries, by collecting retrospective information on the use of immunotherapy in these patients.
CIPNETH; The Causes and Consequences of Incomplete Paclitaxel Administration during the Neoadjuvant treatment of Early Triple negative and HER2 positive breast cancer; DIGICORE; 70 000 € (overall budget) (2022-2023); Luisa Lopes-Conceição (PI) & Claudia Vieira (co-PI)
Breast cancer (BC) is the most commonly diagnosed cancer and the leading cause of cancer-related deaths among women worldwide. Most patients are diagnosed with early-stage BC (eBC) in which the aim of treatment is to increase survival rates by reducing the risk of metastasis occurrence.
The backbone of neoadjuvant chemotherapy for eBC is the sequential administration of anthracyclines and taxanes. The administration of the initially planned dose-intensity of paclitaxel is frequently hampered by side effects, mainly chemotherapy-induced peripheral neuropathy. Importantly, there is no established strategy to treat or prevent this side effect. This study aims to highlight a potential impact of reduced paclitaxel dose-intensity, in a neoadjuvant context, on the effectiveness of the treatment of patients with triple negative and HER2 positive eBC, measured by the complete pathological response rate and survival free from invasive disease.
COLLABORATIONS IN PROJECTS WITH EXTERNAL FUNDING
PAINLESS; Pain relief in palliative care of cancer using home-based neuromodulation and predictive biomarkers; EU; 342 250.00 € (2022-2027); Maria Teresa Carrillo-de-la-Peña – University of Santiago de Compostela (PI) & Rui Medeiros (lead of WP1)
The PAINLESS project is an international and multidisciplinary initiative that seeks to understand the mechanisms underlying cancer-related pain and to provide an alternative to pharmacological relief. PAINLESS uses an evidence-based and innovative approach to investigate a novel, cost-effective, and home-based intervention to manage cancer-related pain using neuromodulation. The PAINLESS project consortium comprises over twenty institutions and is coordinated by Universidade de Santiago de Compostela.
Epidemiological characterization of the population of patients with chronic myeloid leukemia treated at the IPOP; Associação Portuguesa Contra a Leucemia, Sociedade Portuguesa de Hematologia e Novartis; 15 000 € (2023); Ana Meireles (PI)
The introduction of tyrosine kinase inhibitors (TKI) was revolutionary in the treatment of chronic myeloid leukemia (CML). The focus has shifted from delaying disease progression to more advanced stages, to achieving survival similar to the general population, achieving a profound molecular response, and discontinuing therapy while maintaining remission. Furthermore, it is increasingly important to consider the effects of TKIs on patients’ quality of life and patient-reported outcomes in the therapeutic approach. There are several studies on responses and adverse effects in patients with CML. However, the characterization of these patients in Portugal is not yet known. The main objective of this project is to describe the population of patients with CML treated at IPOP and, at the same time, to describe adverse effects of TKIs documented in these patients and which patients are candidates for TKI suspension and if there was a need to resume TKI.
BENCHISTA; International benchmarking of population-based childhood cancer survival by stage at diagnosis; 349 746.50 £ (overall budget) (2021-2024); Kathy Pritchard-Jones and Gemma Gatta (PI) & Ana Maia Ferreira (PI at IPOP)
The BENCHISTA, is a research collaboration between multiple population-based cancer registries (PBCRs) within and outside Europe. The project is designed to understand the reasons of variation in childhood cancer survival rates between countries and to highlight any areas that require improvement.
Also, the project aims to encourage the application of the Toronto Staging Guidelines (TG) by a large number of European and non-European cancer registries (CRs) for the most common solid pediatric cancers. The project focuses on: medulloblastoma, osteosarcoma, Ewing sarcoma, rhabdomyosarcoma, neuroblastoma, and Wilms Tumor. More than 60 CRs will collect information from these types of tumors, diagnosed between 2014-2017, will assign the Toronto Stage at diagnosis and collect other relevant data about the tumor prognosis and survival.
CCI4EU; Comprehensive Cancer Infrastructures for the European Union; EU; 9 984 080.00€; Carla Finocchiaro, Valentina Lungheu and Maurizio Cicero – Organisation of European Cancer Institutes (PI)
The aim of the CCI4EU consortium is to strengthen the research capacities of Comprehensive Cancer Infrastructures, by: defining CCI maturity model; designing tailored Capacity Building Programme interventions; delivering online training courses; implementing targeted onsite interventions; disseminate, exploit and report results.
PROJECTS WITH INTERNAL FUNDING
RHiP; Assessment of tolerance to paclitaxel administration at the Portuguese Oncology Institute of Porto; IPOP-CES 030/024; Teresa Monjardino (PI), Henriqueta Sampaio (PI), Joana Gomes (PI)
The existence of hypersensitivity reactions (HSR) to cytotoxic chemotherapy leads to a dilemma in patient treatment. The alternatives that arise are to maintain therapy, assuming the risk of progression to a more serious or even fatal reaction, or to interrupt, postpone or replace it with another therapeutic regimen, which may not be as effective as the treatment initially prescribed. At IPOP remains to be analyzed how HSR to paclitaxel are treated and managed. This project aims to characterize hypersensitivity reactions to paclitaxel in IPOP and relate them to currently approved administration protocols and patient’s clinical and demographic characteristics.
The influence of forest fires on the incidence of cancer in Portugal; IPOP-CES 014/024; Rita Calisto (PI)
Although many studies have been done regarding the relation between wildfires and acute respiratory diseases, to best of our knowledge, only one study has been done regarding the correlation with the risk of cancer. Since Portugal is a country frequently devasted by forest fires it is of utmost importance to address its consequences on the health of the population, such as the effects on cancer risk. The primary objective of this study is to analyze the relationship between exposure to wildfires in Portugal from 2000 and the incidence of cancers from 2010 to 2020. As secondary objective we will try to evaluate the risk of developing cancer regarding the area burned and the PM concentration in the air.
Correlation between exposure to radon and the incidence of cancer in mainland Portugal; IPOP-CES 006/024; Teresa Garcia (PI)
The aim of this project is to analyze the correlation between environmental exposure to radon and the incidence of various types of cancer, in the three-year period 2018-2020, in the different parishes of mainland Portugal.
Incidence patterns of cancer in the population under 50 years of age, in Portugal, between 2011 and 2019; IPOP-CES 040/024; Teresa Garcia (PI)
The aim of this project is to characterize patterns of cancer incidence from 2001 to 2019 in individuals under 50 years of age, namely stratified by sex, age group, stage at diagnosis, area of residence, and type of cancer.
ULCER2C; Evaluation of the cost for treating pressure ulcers in cancer patients; PI 173-CI-IPOP 07-2022; 3 527.40 € (2021-2024); Luisa Lopes-Conceição (PI)
The project ULCER2C has the following objectives:
i) To estimate the cost for treating pressure ulcers associated with heath care in hospitalized cancer patients at IPOP, using the TDABC method;
ii) To quantify the association between the occurrence of pressure ulcers associated with heath care in hospitalized cancer patients at IPOP and the length of inpatient stay.
COLLABORATION IN PROJECTS WITH INTERNAL FUNDING
Epidemiological analysis of breast cancer in elderly women from Instituto Português de Oncologia do Porto, and its impact on screening programs; IPOP-CES 033/024; Filipa Pereira (PI)
In the present research project, we intend to evaluate new cases and mortality in elderly breast cancer women followed up at IPOP. The course of disease will be characterized in order to evaluate the impact of the extension of the age of breast cancer screening to older ages.
Malignant Pleural Mesothelioma – Incidence and Mortality in Portugal; IPOP-CES 129/023; Cátia dos Santos – Escola Nacional de Saúde Pública (PI)
Widely used since ancient times, due to its important chemical and physical characteristics, asbestos is recognized by International Agency for Research on Cancer (IARC) as carcinogenic to humans and the main cause of occupational exposure associated with cancer in industrialized countries. Although the relationship between asbestos exposure and Malignant Pleural Mesothelioma (MPM) is well known, much is still unknown about asbestos consumption and its location, as well as incidence and mortality of MMP. In Portugal, it is estimated that around 97% of MMP cases are underreported as an occupational disease. Despite the use of asbestos being banned in 1999, there is no national surveillance program, and consequently remains unknown the true dimension of this problem in the country.
MultiDPCa; Active surveillance for prostate cancer: a multidimensional study of a prospective cohort; Rui Freitas (PI)
The main goal of this project is to develop a prospective single-center longitudinal study in a low-risk prostate cancer cohort of patients over a period of 84 months. Simultaneously with clinical endpoints, quality of life and cost-effectiveness parameters will be assessed and compared with those of patients with low-risk (and selected cases of intermedium risk) prostate cancer that opt for alternative treatments rather than active surveillance such as radical prostatectomy, brachytherapy and external beam radiation therapy.
Melanocytic Tumours in Dogs and Cats – Comparative Study with the Human Counterpart; IPOP-CES 039/024; Andreia Santos – ICBAS (PI)
The objective of this project is to analyze the distribution of melanocytic tumors in Portuguese dogs and cats, considering breed, sex, age and municipality of residence, and to carry out a comparative analysis with the same tumors in humans, highlighting the similarities and analyzing geographic distribution.
Costs analysis, effectiveness and safety associated with Chimeric Antigen Receptor-T cell therapy: results from a Portuguese Comprehensive Cancer Center; IPOP-CES 188/020; (2019-2024); Sergio Chacim (PI)
In the population of patients treated with CAR T cells at IPOP, the aims of this project are:
– Assess overall response rate, complete and partial response rate, as well as duration of response
– Evaluate progression-free survival and overall survival
– Assess quality of life during treatment
– Assess toxicities during treatment
– Calculate direct costs associated with treatment
– Compare response rates obtained with CAR T cell treatment with a retrospective cohort of identical characteristics, treated between 2014 – 2018 at IPOP.
Publications:
Chacim, S., Monjardino, T., Cunha, J. L., Medeiros, P., Redondo, P., Bento, M. J., Mariz, J. M., Costs, effectiveness, and safety associated with Chimeric Antigen Receptor (CAR) T-cell therapy: Results from a Comprehensive Cancer Center. PLoS ONE. 2022; 17(12): e0278950.
Comparison of incidence, survival and healthcare utilization between patients with second primary tumors and patients with only one primary tumor (female breast, prostate, colon and rectal, lung and thyroid cancer); IPOP-CES 50/019; (2019-2024); Filipa Fontes (PI)
The main objectives of this project are to estimate the cumulative incidence of second primary cancers (SPC) in four population-based cohorts of cases with first primary cancer (FPC) of female breast, prostate, colon and rectum, lung and thyroid, followed by for 10 years, according to sociodemographic and FPC characteristics. It is also intended to describe and compare the health care utilization, and costs associated with the health care, of patients with SPC and patients without SPC treated at the IPOP.
FAROL; Implementation of a financing model based on the measurement of clinical and non-clinical outcomes and integrated disease management in lung cancer at IPO Porto; (2018-2023); Marta Soares (PI).
The FAROL project, focused on Health Outcomes and Integrated Disease Management, consists of the development of a funding model centered on measuring results with incentives associated with quality.
SELECTED PUBLICATIONS
- De Angelis R, Demuru E, Baili P, Troussard X, Katalinic A, Chirlaque Lopez MD, Innos K, Santaquilani M, Blum M, Ventura L, Paapsi K, Galasso R, Guevara M, Randi G, Bettio M, Botta L, Guzzinati S, Dal Maso L, Rossi S; EUROCARE-6 Working Group. Complete cancer prevalence in Europe in 2020 by disease duration and country (EUROCARE-6): a population-based study. Lancet Oncol. 2024 Mar;25(3):293-307. doi: 10.1016/S1470-2045(23)00646-0. Epub 2024 Jan 30. PMID: 38307102.
- Cardoso R, Guo F, Heisser T, Hackl M, Ihle P, De Schutter H, Van Damme N, Valerianova Z, Atanasov T, Májek O, Mužík J, Nilbert MC, Tybjerg AJ, Innos K, Mägi M, Malila N, Bouvier AM, Bouvier V, Launoy G, Woronoff AS, Cariou M, Robaszkiewicz M, Delafosse P, Poncet F, Katalinic A, Walsh PM, Senore C, Rosso S, Vincerževskienė I, Lemmens VEPP, Elferink MAG, Johannesen TB, Kørner H, Pfeffer F, Bento MJ, Rodrigues J, Alves da Costa F, Miranda A, Zadnik V, Žagar T, Lopez de Munain Marques A, Marcos-Gragera R, Puigdemont M, Galceran J, Carulla M, Chirlaque MD, Ballesta M, Sundquist K, Sundquist J, Weber M, Jordan A, Herrmann C, Mousavi M, Ryzhov A, Hoffmeister M, Brenner H. Colorectal cancer incidence, mortality, and stage distribution in European countries in the colorectal cancer screening era: an international population-based study. Lancet Oncol. 2021 Jul;22(7):1002-1013. doi: 10.1016/S1470-2045(21)00199-6. Epub 2021 May 25. PMID: 34048685.
- Girardi F, Rous B, Stiller CA, Gatta G, Fersht N, Storm HH, Rodrigues JR, Herrmann C, Marcos-Gragera R, Peris-Bonet R, Valkov M, Weir HK, Woods RR, You H, Cueva PA, De P, Di Carlo V, Johannesen TB, Lima CA, Lynch CF, Coleman MP, Allemani C; CONCORD Working Group. The histology of brain tumors for 67 331 children and 671 085 adults diagnosed in 60 countries during 2000-2014: a global, population-based study (CONCORD-3). Neuro Oncol. 2021 Oct 1;23(10):1765-1776. doi: 10.1093/neuonc/noab067. PMID: 33738488; PMCID: PMC8485444.
- Libânio D, Rodrigues JR, Bento MJ, Ebigbo A, Messman H, Verhoeven RHA, Van Damme N, Bisschops R, Spaander MCW, Dinis-Ribeiro M. Gastric cancer incidence and mortality trends 2007-2016 in three European countries. Endoscopy. 2022 Jul;54(7):644-652. doi: 10.1055/a-1673-1118. Epub 2021 Dec 16. PMID: 34666399.
- Ghione P, Palomba ML, Patel AR, Bobillo S, Deighton K, Jacobson CA, Nahas M, Hatswell AJ, Jung AS, Kanters S, Snider JT, Neelapu SS, Ribeiro MT, Brookhart MA, Ghesquieres H, Radford J, Gribben JG. Comparative effectiveness of ZUMA-5 (axi-cel) vs SCHOLAR-5 external control in relapsed/refractory follicular lymphoma. Blood. 2022 Aug 25;140(8):851-860. doi: 10.1182/blood.2021014375. PMID: 35679476; PMCID: PMC9412012.
NATIONAL COLLABORATIONS
Registo Oncológico Nacional de Todos os Tumores na População Residente em Portugal, em 2019
National Cancer Registry (Portugal)
The publication of the National Cancer Registry (RON) aims to disseminate information regarding the incidence and mortality of cancer in Portugal in 2019. The data presented refer to all tumors in the population residing in Portugal at the time of diagnosis, excluding cases handled under cooperation protocols, for example, with Portuguese-speaking African Countries. The publication comprises incidence and mortality data, incidence distribution maps of the main types of tumor and the assessment of the quality of information, through the mortality/incidence ratio and comparison with the national incidence of 2010 and 2018.
INTERNATIONAL COLLABORATIONS
E-OEN – European Oncology Evidence Network
The Oncology Evidence Network is a research network of Europe’s larger cancer hospitals working with IQVIA to provide high quality, real world data reflecting the latest clinical practice. E-OEN is set up to simplify delivery of up-to-date real-world evidence.
Link: https://www.iqvia.com/solutions/real-world-evidence/evidence-networks/oncology-evidence-network
VENUSCANCER – Women’s cancers: do variations in patterns of care explain the world-wide inequalities in survival and avoidable premature deaths?
The EU-funded VENUSCANCER project is seeking to understand the reasons behind starkly different patterns of survival and avoidable deaths in cancers affecting women around the world. This project will show that it is possible (a) to collect high-quality, complete clinical information at population level even in low- and middle-income countries; (b) to explain the striking inequalities in women’s cancer survival world-wide, and (c) to summarize these inequalities in a single number (avoidable deaths) as a powerful tool that motivates policymakers to reduce inequalities in survival.
Link: https://cordis.europa.eu/project/id/772345
PancreOS – Pancreatic cancer overall survival registry in Europe
The PancreOS is aimed to be a European network of pancreatic cancer registries to improve the collection of a comprehensive set of prospective data from pancreatic cancer patients at any stage of the disease, so to fill the gap of the lack of organized data collection in pancreatic cancer and to promote a better understanding of the disease and the development of more efficacious diagnosis strategies and personalized treatments. Among the specific objectives: to implement a European network of pancreatic cancer registries to provide a comprehensive view of pancreatic cancer patient management in Europe; to identify and present the inequalities in reporting pancreatic cancer data; to promote a better understanding of the disease and the development of more effective diagnosis strategies and personalized treatments.
Link: https://pancreaticcancereurope.eu/project/pancreos-pancreatic-cancer-overall-survival-registry-in-europe-2021/
VOICE – Value based healthcare for Outcomes In breast and lung Cancer in Europe
The project is based on the Value-Based Healthcare (VBHC) model that proposes an innovative strategic framework aimed at guiding healthcare services in their re-organization to provide patients with the highest value healthcare at the best cost, specifically in the case of breast and lung cancer.
Link: https://www.kronikgune.org/en/european-community-voice/
www.kronikgune.org/en/the-voice-community-nominated-for-the-value-based-dragons-grant-endorsement-2021-awards/
DigiCore – DiGital Institute for Cancer Outcomes Research
DIGICORE is a pan-European research network built to accelerate the Implementation of precision oncology in Europe. DIGICORE promotes and equips cancer centers in their use of routine electronic health records (EHR) and molecular diagnostic information (MDX) for trial automation, real world outcomes research, digital diagnostics and care quality management. The goal is to shape a digital research infrastructure based on digital interoperability between its Members. Network membership supports them to improve data quality and completeness, develop new data sources and tools, share digital best practices and promote novel, digitally enabled research methods.
Link: https://digicore-cancer.eu/
OECI Working Group on Cancer Economics and Benchmarking
The primary objectives of the WG is to demonstrate remits of cost-benefits analyses in oncology and to establish standards in budget impact analysis for OECI members.
Link: https://www.oeci.eu/WG.aspx?id=12&group=1
IPAAC – Innovative Partnership for Action Against Cancer WP7 PILOT 2
Italian National Institute of Health, Italy
The IPAAC Joint Action brings together 24 Associated Partners (with Affiliated Entities, 44 partners) across Europe whose main objectives are to build upon deliverables of the CANCON Joint Action and to implement innovative approaches to cancer control. A Roadmap on Implementation and Sustainability of Cancer Control Actions will be the main deliverable of this Joint Action.
Link: https://www.ipaac.eu/
CONCORD – Global surveillance of cancer survival
London School of Hygiene & Tropical Medicine, UK
CONCORD is the program for world-wide surveillance of trends in cancer survival, led by the London School of Hygiene & Tropical Medicine. The CONCORD program is endorsed by 40 national and international agencies, including WHO EURO, the Organization for Economic Co-operation & Development (OECD) and the World Bank.
Link: https://csg.lshtm.ac.uk/research/themes/concord-programme/
WASABY – WAter & Soil contamination and Awareness on Breast cancer risk in Young women
Istituto Nazionale Tumori di Milano, Italy
The proposal involves the design of a model able to identify areas with higher cancer rates, so to study whether pollutant contamination may be a cause for increased cancer risk. Hence it aims to improve the health of EU citizens and reduce health inequalities.
Link: http://www.wasabysite.it/
EUROCARE – Survival of cancer patients in Europe
Istituto Nazionale Tumori di Milano and of the Italian National Institute of Health, Italy
EUROCARE is the widest collaborative research project on cancer survival in Europe. The project started in 1989 under the initiative of two research institutes, Istituto Nazionale Tumori (Milan, Italy) www.istitutotumori.mi.it and Istituto Superiore di Sanità (Rome, Italy) www.iss.it, with the participation of many population-based Cancer Registries throughout Europe. Aims of the study are: to provide an updated description of cancer survival time trends and differences across European countries, to measure cancer prevalence, and to study patterns of care of cancer patients.
Link: http://www.eurocare.it/
RARECAREnet – Surveillance of Rare Cancers in Europe
Istituto Nazionale Tumori di Milano, Italy
Building on the experience of the previous project RARECARE and, in collaboration with RCE and many other RARECARENet aims at building an information network to provide comprehensive information on rare cancers to the community at large (oncologists, general practitioners, researchers, health authorities, patients and their families).
Link: https://www.rarecarenet.eu/
IICC – International Incidence of Childhood Cancer
International Agency for Research on Cancer (IARC) and the International Association of Cancer Registries (IACR), France
The objective is to disseminate the available data on the incidence of cancer in children around the world. This will be achieved through the publication of a monograph, the third volume in the IICC series (IICC-3). Data from 440 registries in five continents have been collected, validated, analyzed, and evaluated.
Link: https://iicc.iarc.fr/
EURECCA – EUropean REgistry of Cancer CAre or EURopEan CanCer Audit
ESSO (European Society of Surgical Oncology), Belgium
EURECCA is an international multidisciplinary platform of clinicians and epidemiologists aiming to improve the quality of cancer care by data registration, feedback, forming plans for improvement and sharing knowledge of performance and science. EURECCA’s goal is to enlarge the European platform and infrastructure to cooperate with national registries or audit structures, expand the coverage of cancer patient outcome data that is captured and audit the quality of multidisciplinary cancer care.
Link: https://www.essoweb.org/projects/eurecca-cancer-care/
EurocanPlatform for Translational Cancer Research
Karolinska Institutet, Sweden
EurocanPlatform will work towards the goal of decreasing cancer mortality by dealing with three main areas of strategic research: prevention, early detection and improved treatments. It will build the necessary resources and know-how for the entire research continuum: basic research, early and late translational research, clinical research, epidemiological research, implementation in care and population based outcome research.
Link: https://eurocanplatform.eu/category/industries/
UNCAN.eu, a European initiative to UNderstand CANcer
Institut National de la Santé et de la Recherche Médicale, France
The blueprint for UNCAN.eu will propose to set up a European Federated Cancer Research data hub and to generate a series of use cases, addressing major challenges in cancer research. These ambitious and innovative, but realistic and focussed, use cases will be cross-border and trans-disciplinary research programmes built in a problem-solving manner. Results of these use cases will feed the Cancer Research data hub with findable, accessible, interoperable, and re-usable (FAIR) cancer research data. These research data will be combined with patient health and any other relevant data (e.g., from longitudinal cohorts, geographical observations, consumer and lifestyle data) at an unprecedented scale. UNCAN.eu that will bring all relevant players and information together, based on existing efforts in Europe and beyond.
Link: https://uncan.eu/
GRELL – Group for Cancer Epidemiology and Registration in Latin Language Countries
Link: https://www.grell-network.org/
CRICCS – Cancer Risk in Childhood Cancer Survivors: understanding the causes to target prevention
Link: https://criccs.iarc.who.int/