DuTOC: The prospective Dutch Thoracic Oncology Cohort: A nationwide infrastructure to collect clinical data, PROMS and bio-material to support thoracic oncology studies

Abstract

The Dutch Thoracic Oncology Cohort (DuTOC) is a nationwide cohort for patients with thoracic malignancies collecting patient characteristics, quality of life and biomaterials after informed consent of the patient. With this data and material DuTOC is a solid infrastructure for retrospective and prospective studies involving treatment, (molecular) diagnostics, quality control, biomarkers and translational research and quality of life. DuTOC is initiated by the Dutch Association of Pulmonologists and is a collaboration of all clinicians involved in cancer-care and other stakeholders in the field of thoracic malignancies such as patient advocacies, health regulatory agencies, cancer registries and pharmaceutical companies. DuTOC has the ambition to automate real-time data acquisition. This minimizes the workload of the research staff and facilitates the transition to a self-learning health care system based on real-time data, incorporating long-term longitudinal assessment of patient reported outcome measurements. Therefore, DuTOC will play a crucial role in the improvement of the care for patients with thoracic malignancies.