1. The Prospective Dutch Colorectal Cancer (PLCRC) cohort: real-world data facilitating research and clinical care
- Author
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Derksen, Jeroen W. G., Vink, Geraldine R., Elferink, Marloes A. G., Roodhart, Jeanine M. L., Verkooijen, Helena M., van Grevenstein, Wilhelmina M. U., Siersema, Peter D., May, Anne M., Koopman, Miriam, Beets, Geerard L., Belt, Eric J. Th., Berbée, Maaike, Beverdam, Frederique H., Blankenburgh, Ruud, Coene, Peter Paul L. O., van Cruijsen, Hester, Dekker, Jan Willem T., van Dodewaard-de Jong, Joyce M., Erdkamp, Frans L. G., de Groot, Jan Willem B., Haringhuizen, Annebeth W., Helgason, Helgi H., Hendriks, Mathijs P., de Hingh, Ignace H. J. T., Hoekstra, Ronald, Ijzermans, Jan N. M., Jansen, Jan, Kloppenberg, Frank W. H., van Lent, Anja U. G., Los, Maartje, Meijerink, Martijn R., Mekenkamp, Leonie J. M., Nieboer, Peter, Peeters, Koen C. M. J., Peters, Natascha A. J. B., Polée, Marco B., Pruijt, Johannes F. M., Punt, Cornelis J. A., van Ufford-Mannesse, Patricia Quarles, Rietbroek, Ron C., Schiphorst, Anandi H. W., van der Velden, Arjan Schouten, Schrauwen, Ruud W. M., Sie, Mark P. S., Simkens, Lieke, Sommeijer, Dirkje W., Sonneveld, Dirk J. A., Spierings, Leontine E. A., Stockmann, Hein B. A. C., Talsma, Koen, Terheggen, Frederiek, ten Tije, Albert J., Tjin-A-Ton, Manuel L. R., Valkenburg-van Iersel, Liselot B. J., Veenstra, Renzo P., van der Velden, Ankie M. T., Vermaas, Maarten, Vles, Wouter J., Vogelaar, Jeroen F. J., van Voorthuizen, Theo, de Vos, Aad I., Wegdam, Johannes A., de Wilt, Johannes H. W., Zimmerman, David D. E., Surgery, RS: GROW - R3 - Innovative Cancer Diagnostics & Therapy, Epidemiologie, CCA - Cancer Treatment and quality of life, Radiology and nuclear medicine, Internal medicine, and VU University medical center
- Subjects
Male ,medicine.medical_specialty ,Colorectal cancer ,Epidemiology ,Science ,Population ,MODELS ,MEDLINE ,Logistic regression ,Representativeness heuristic ,Article ,03 medical and health sciences ,Tumours of the digestive tract Radboud Institute for Health Sciences [Radboudumc 14] ,0302 clinical medicine ,Cancer epidemiology ,Medical research ,All institutes and research themes of the Radboud University Medical Center ,SDG 3 - Good Health and Well-being ,Multidisciplinary approach ,COLON ,medicine ,Humans ,030212 general & internal medicine ,Prospective Studies ,Registries ,education ,Aged ,Netherlands ,Aged, 80 and over ,education.field_of_study ,Multidisciplinary ,business.industry ,Middle Aged ,medicine.disease ,Cancer registry ,TRIALS ,Outcomes research ,030220 oncology & carcinogenesis ,Family medicine ,Cohort ,Medicine ,Female ,business ,Colorectal Neoplasms - Abstract
Real-world data (RWD) sources are important to advance clinical oncology research and evaluate treatments in daily practice. Since 2013, the Prospective Dutch Colorectal Cancer (PLCRC) cohort, linked to the Netherlands Cancer Registry, serves as an infrastructure for scientific research collecting additional patient-reported outcomes (PRO) and biospecimens. Here we report on cohort developments and investigate to what extent PLCRC reflects the “real-world”. Clinical and demographic characteristics of PLCRC participants were compared with the general Dutch CRC population (n = 74,692, Dutch-ref). To study representativeness, standardized differences between PLCRC and Dutch-ref were calculated, and logistic regression models were evaluated on their ability to distinguish cohort participants from the Dutch-ref (AU-ROC 0.5 = preferred, implying participation independent of patient characteristics). Stratified analyses by stage and time-period (2013–2016 and 2017–Aug 2019) were performed to study the evolution towards RWD. In August 2019, 5744 patients were enrolled. Enrollment increased steeply, from 129 participants (1 hospital) in 2013 to 2136 (50 of 75 Dutch hospitals) in 2018. Low AU-ROC (0.65, 95% CI: 0.64–0.65) indicates limited ability to distinguish cohort participants from the Dutch-ref. Characteristics that remained imbalanced in the period 2017–Aug’19 compared with the Dutch-ref were age (65.0 years in PLCRC, 69.3 in the Dutch-ref) and tumor stage (40% stage-III in PLCRC, 30% in the Dutch-ref). PLCRC approaches to represent the Dutch CRC population and will ultimately meet the current demand for high-quality RWD. Efforts are ongoing to improve multidisciplinary recruitment which will further enhance PLCRC’s representativeness and its contribution to a learning healthcare system.
- Published
- 2021
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