{
  "abstract": "Introduction Cancer registries remain the gold standard for global cancer monitoring, yet complementing them with electronic health records and claims can significantly enhance the understanding of the cancer burden by providing a more complete picture of the patient journey. The main aim of this project is to serve as a proof of concept for using real-world data mapped to the Observational Medical Outcomes Partnership (OMOP) common data model (CDM) to monitor cancer epidemiology over time and characterise patients’ clinical history and outcomes.Methods and analysis This study will be conducted as an observational cohort study using a multinational network of large real-world data sources mapped to the OMOP CDM. Electronic health records (EHR) from primary and secondary care, health insurance claims and cancer registry data will be included. To date, 20 databases from 16 countries, mainly from Europe but also North America and Asia, have committed to participate in the project.We will investigate the temporal trends in incidence, prevalence and survival of 36 cancers across haematopoietic and solid tumours from 2000 (or the start of accurate data if later) to the last year with complete data. Data from all individuals registered in each of the participating data sources will be eligible for inclusion in the study. For primary care EHR and claims, individuals will be required to have at least 1 year of prior observation to ensure the identification of incident cases and adequate capture of patient characteristics. We will estimate crude and age-standardised incidence and 5-year partial prevalence. Additionally, we will estimate crude and age-standardised overall survival at 1, 5 and 10 years for the total study period and by diagnosis year groups defined according to data availability. All study objectives will be investigated at the database level, with results stratified by age and sex. For incidence and survival analyses, additional stratifications will be performed by clinical conditions and smoking status (where available). We will use the National Cancer Institute (NCI) Joinpoint Regression Programme to model overall trends in cancer incidence and the NCI JPSurv software to estimate trends in survival. Finally, we will characterise individuals diagnosed with an incident cancer based on demographics, clinical conditions and medication use at different time windows.Findings will be presented separately for each database and further summarised through descriptive aggregation by country and data source type.Ethics and dissemination Each data partner will obtain study approval from their local institutional review boards prior to study execution. Distributed queries will be employed, whereby standardised analytical code is shared and run at each site locally. Deidentified, aggregated results will be returned from all participating sites. A minimum cell count of five will be used when reporting results, depending on each collaborator’s data governance requirements.All study code will be publicly available, and findings will be submitted to open science journals to promote transparency and reproducibility.",
  "authors": [
    {
      "affiliations": [
        "Fundació Institut Universitari per a la recerca a l’Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol), Barcelona, Spain",
        "Programa de Doctorat en Metodologia de la Recerca Biomèdica i Salut Pública, Universitat Autonoma de Barcelona, Barcelona, Spain"
      ],
      "name": "Irene López-Sánchez"
    },
    {
      "affiliations": [
        "Fundació Institut Universitari per a la recerca a l’Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol), Barcelona, Spain"
      ],
      "name": "Anna Palomar-Cros"
    },
    {
      "affiliations": [
        "Fundació Institut Universitari per a la recerca a l’Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol), Barcelona, Spain"
      ],
      "name": "Agustina Giuliodori"
    },
    {
      "affiliations": [
        "Fundació Institut Universitari per a la recerca a l’Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol), Barcelona, Spain"
      ],
      "name": "Laura Granés"
    },
    {
      "affiliations": [
        "Fundació Institut Universitari per a la recerca a l’Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol), Barcelona, Spain"
      ],
      "name": "Laura Pérez-Crespo"
    },
    {
      "affiliations": [
        "Department of Medical Informatics, Erasmus University Medical Center Rotterdam, Rotterdam, Netherlands"
      ],
      "name": "Berta Raventós"
    },
    {
      "affiliations": [
        "Health Data Sciences (HDS), Translational Sciences, Botnar Research Centre, University of Oxford, Oxford, UK"
      ],
      "name": "Edward Burn"
    },
    {
      "affiliations": [
        "Department of Medical Informatics, Erasmus University Medical Center Rotterdam, Rotterdam, Netherlands"
      ],
      "name": "Anton Barchuk"
    },
    {
      "affiliations": [
        "Department of Medical Oncology, Antwerp University Hospital, Edegem, Belgium",
        "MIPRO, University of Antwerp, Antwerp, Belgium"
      ],
      "name": "Annelies Verbiest"
    },
    {
      "affiliations": [
        "Cegedim Health Data, Boulogne-Billancourt, France"
      ],
      "name": "Caroline Eteve-Pitsaer"
    },
    {
      "affiliations": [
        "Health Data Sciences (HDS), Translational Sciences, Botnar Research Centre, University of Oxford, Oxford, UK"
      ],
      "name": "Danielle Newby"
    },
    {
      "affiliations": [
        "Health Data Sciences (HDS), Translational Sciences, Botnar Research Centre, University of Oxford, Oxford, UK"
      ],
      "name": "Elin J Rowlands"
    },
    {
      "affiliations": [
        "Department of Registration, Norweigan Institute of Public Health, Cancer Registry of Norway, Oslo, Norway"
      ],
      "name": "Espen Enerly"
    },
    {
      "affiliations": [
        "IQVIA Real World Solutions, London, UK"
      ],
      "name": "Gargi Jadhav"
    },
    {
      "affiliations": [
        "Belgian Cancer Registry, Brussels, Belgium"
      ],
      "name": "Harlinde De Schutter"
    },
    {
      "affiliations": [
        "International Ph.D. Program in Biotech and Healthcare Management, College of Management, Taipei Medical University, Taipei, Taiwan",
        "Clinical Data Center, Office of Data Science, Taipei Medical University, Taipei, Taipei City, Taiwan"
      ],
      "name": "Jason C Hsu"
    },
    {
      "affiliations": [
        "Department of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, Netherlands"
      ],
      "name": "Jelle Evers"
    },
    {
      "affiliations": [
        "Department of Haematology, Oncology and Clinical Immunology, General Hospital Varazdin, Varazdin, Croatia"
      ],
      "name": "Josip Vrancic"
    },
    {
      "affiliations": [
        "Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, London, England, UK"
      ],
      "name": "Laia Peruchet- Noray"
    },
    {
      "affiliations": [
        "Division of Haematology/Oncology, The Hospital for Sick Children, Toronto, Ontario, Canada"
      ],
      "name": "Lillian Sung"
    },
    {
      "affiliations": [
        "Institute for Clinical Data Management, Semmelweis University, Budapest, Hungary"
      ],
      "name": "Loretta Kiss"
    },
    {
      "affiliations": [
        "Department of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, Netherlands"
      ],
      "name": "Maaike Van Swieten"
    },
    {
      "affiliations": [
        "Department for Malignant Diseases with Registry, Croatian Institute of Public Health, Zagreb, Croatia",
        "Andrija Stampar School of Public Health, School of Medicine, University of Zagreb, Zagreb, Croatia"
      ],
      "name": "Mario Šekerija"
    },
    {
      "affiliations": [
        "Department of Medical Informatics, Erasmus University Medical Center Rotterdam, Rotterdam, Netherlands"
      ],
      "name": "Mees Mosseveld"
    },
    {
      "affiliations": [
        "HealthPartners Institute, Bloomington, Minnesota, USA"
      ],
      "name": "Patricia L Mabry"
    },
    {
      "affiliations": [
        "University of Tartu, Tartu, Tartu County, Estonia"
      ],
      "name": "Raivo Kolde"
    },
    {
      "affiliations": [
        "HealthPartners Institute, Bloomington, Minnesota, USA"
      ],
      "name": "Samuel Patnoe"
    },
    {
      "affiliations": [
        "Department of Biomedical Systems Informatics, Yonsei University College of Medicine, Seoul, Korea (the Republic of)",
        "Yonsei Institute for Innovation in Digital Health, Yonsei University, Seoul, Korea (the Republic of)"
      ],
      "name": "Seng Chan You"
    },
    {
      "affiliations": [
        "Department of Biomedical Systems Informatics, Yonsei University College of Medicine, Seoul, Korea (the Republic of)",
        "Yonsei Institute for Innovation in Digital Health, Yonsei University, Seoul, Korea (the Republic of)"
      ],
      "name": "Subin Kim"
    },
    {
      "affiliations": [
        "University of Tartu, Tartu, Tartu County, Estonia",
        "STACC, Tartu, Estonia"
      ],
      "name": "Sulev Reisberg"
    },
    {
      "affiliations": [
        "PhD Program in School of Nutrition and Health Sciences, College of Nutrition, Taipei Medical University, Taipei, Taiwan"
      ],
      "name": "Thi Kim Hien Nguyen"
    },
    {
      "affiliations": [
        "Data and Analytics, Finnish Institute for Health and Welfare (THL), Helsinki, Finland"
      ],
      "name": "Toni Lehtonen"
    },
    {
      "affiliations": [
        "Department of Research and Innovation, Møre and Romsdal Hospital Trust, Ålesund, Norway"
      ],
      "name": "Tor Åge Myklebust"
    },
    {
      "affiliations": [
        "Institute for Clinical Data Management, Semmelweis University, Budapest, Hungary"
      ],
      "name": "Zsolt Bagyura"
    },
    {
      "affiliations": [
        "Nemesis Health, New York, New York, USA"
      ],
      "name": "Asieh Golozar"
    },
    {
      "affiliations": [
        "Fundació Institut Universitari per a la recerca a l’Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol), Barcelona, Spain"
      ],
      "name": "Elena Roel"
    },
    {
      "affiliations": [
        "Fundació Institut Universitari per a la recerca a l’Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol), Barcelona, Spain",
        "Department of Medical Informatics, Erasmus University Medical Center Rotterdam, Rotterdam, Netherlands"
      ],
      "name": "Talita Duarte-Salles"
    }
  ],
  "title": "Temporal trends in epidemiology and patient characteristics of 36 cancers: a protocol for a multinational population-based cohort study using OMOP-standardised databases to investigate CANcer (OMOPCAN)",
  "uid": "d7b11e68-e0a9-581d-8574-b8edda79dde8"
}