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STICHTING INTEGRAAL KANKERCENTRUM NEDERLAND

Country: Netherlands
3 Projects, page 1 of 1
  • Open Access mandate for Publications and Research data
    Funder: EC Project Code: 101057482
    Overall Budget: 7,292,900 EURFunder Contribution: 7,235,020 EUR
    Partners: UM, INT, Maria Sklodowska-Curie National Research Institute of Oncology, NKI ALV, CLB, Institut Gustave Roussy, ECCO, STICHTING INTEGRAAL KANKERCENTRUM NEDERLAND, EORTC, FFUND BV...

    STRONG-AYA is a new, interdisciplinary, multi-stakeholder European network to improve healthcare services, research and outcomes for Adolescents and Young Adults (AYA) with cancer, defined as individuals aged 15-39 years at cancer diagnosis. AYAs with cancer form a unique group; they face age-specific issues (e.g. infertility, unemployment, financial problems) and decreased quality of life due to cancer and its treatment. Unlike dedicated healthcare and trials for pediatric cancer patients, AYA-specific healthcare services are scarce and vary across Europe. AYAs who are at the core of society and economy need access to age-adjusted and high-quality healthcare. AYA-care and research will benefit from collection and pooling of patient-centered data and collaboration among all stakeholders: patients, healthcare professionals, scientists, and policymakers. Our consortium of clinical and scientific leaders in AYA-care, data science and registries, European Cancer Organisation, Youth Cancer Europe and EORTC will build on previous initiatives and EU grants. Within STRONG-AYA we will set up a value-based healthcare research ecosystem to develop data-driven, interactive policy and visualization tools that bring, in co-creation with all stakeholders including patients, novel insights into AYA healthcare. The project objectives, include: 1) Development of a Core Outcome Set (COS) for AYAs with cancer; 2) Implementation of the COS in 5 national healthcare systems (FR, IT, NL, UK, PL) and establish national infrastructures for outcome data management and clinical decision-making and a pan-European ecosystem that also welcomes future European countries; 3) Disseminate outcomes and facilitate interactions between national and pan-European stakeholders to develop data-driven analysis tools to process and present relevant outcomes, establish feedback loops for AYA cancer patients and the healthcare systems, and improve the reporting and assessment of outputs towards policy-makers.

  • Open Access mandate for Publications and Research data
    Funder: EC Project Code: 945345
    Overall Budget: 21,978,900 EURFunder Contribution: 10,476,700 EUR
    Partners: AbbVie, Charité - University Medicine Berlin, ERASMUS MC, NOVARTIS, AstraZeneca (Sweden), Roche (Switzerland), ICS, I-HD, The Hyve, SARD...

    Patients' outcomes and experience of health care can be improved through the systematic capture and use of information from their perspective. We are currently not using all the information we could gain fromPatients' outcomes and experience of health care can be improved through the systematic capture and use of information from their perspective. We are currently not using all the information we could gain from Patient-Reported Outcomes (PROs) to accurately measure value from the patient perspective. This is due to the lack of standardisation, interoperability and implementation of PRO measurement schemes. We urgently need a European scale network of outcomes data collection, analysis and evidence sharing to inform clinical practice and healthcare decisions. To tackle these issues, this public-private consortium brings together scientists, clinicians and professionals to design and set up independent, patient-centred, Health Outcomes Observatories (H2Os). With input from patients, providers and health care decision makers (health ministries, health insurers, regional health authorities, public health agencies, medicines regulators, health technology assessment agencies), these Observatories will collect data and provide information not only for individual clinical care, but also for evaluation of new technologies and for healthcare decision making. We will establish ethically and legally sound national, or regional, H2Os and run these initially in four countries for three diseases. Based on a hybrid model of federated and centralised data collection, management and analysis, these Observatories will operate under a governance model that will guarantee that data are protected under jurisdictional data protection law. H2Os will be connected to a pan-European umbrella H2O to facilitate interoperability, guide reproducibility in other countries, and promote the benefit of measuring and using patient-centred outcomes at regional, national, European and global levels.

  • Open Access mandate for Publications and Research data
    Funder: EC Project Code: 101057048
    Overall Budget: 8,190,470 EURFunder Contribution: 8,190,470 EUR
    Partners: UDEUSTO, TNO, MOU, CLB, FPNS, Oslo University Hospital, DIGICORE, IIS-FJD, Utrecht University, UPM...

    The main objective of this project is to establish a Data Space for rare cancers (RC) that will make possible the re-use of existing multisource health data (cancer registry data, national registries, data from biobanks etc.) across European healthcare systems leveraging emerging interoperability technologies and AI approaches. The realized "Rare Cancer Data Ecosystem" is expected to improve the quality and the organization of RC patients care, and to increase knowledge on rare cancers advancing health research, so that all patients have equal access to high quality specialist care. The project approach will be experienced in the framework of the European reference network for rare adult solid cancers (EURACAN).