The Prospective Dutch Colorectal Cancer (PLCRC) Cohort: Towards a unique patient-reported outcome enriched “real-world” data cohort.

2020 ◽  
Vol 38 (4_suppl) ◽  
pp. 52-52
Author(s):  
Jeroen W.G. Derksen ◽  
Marloes A.G. Elferink ◽  
Geraldine R. Vink ◽  
Jeanine M.L. Roodhart ◽  
Anne Maria May ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
The Netherlands ◽  
Cancer Registry ◽  
Real World ◽  
Patient Reported Outcome ◽  
Real World Data ◽  
Small Shift ◽  
Netherlands Cancer Registry ◽  
Patient Reported ◽  
Demographical Data

52 Background: The initiation of high-quality pan-population cohort studies is a major research priority for the improvement of colorectal cancer (CRC) outcomes as advocated by regulators and the research community. In 2013, the PLCRC cohort of the Dutch Colorectal Cancer Group was initiated in which longitudinal clinical data and patient-reported outcomes (PRO) are collected, along with pathology data and biospecimens, to serve as an infrastructure for a broad body of observational and (randomized) interventional research. Here we report on the cohort’s progress and investigate whether it develops in the direction of a nation-wide cohort of “real-world” nature. Methods: Clinical and demographical data of PLCRC participants, as prospectively collected in the Netherlands Cancer Registry by qualified data managers, were compared with the total Dutch CRC population with incidence between 2013-2017 (ref. population) which was also obtained from the Netherlands Cancer Registry. Variable distributions are compared using t-tests and χ2-tests, whereas cohort characteristics are descriptive. Results: In June 2019, 5,746 patients were enrolled in 52 / 75 Dutch hospitals, and 81% consented to receive repeated PROs. Compared to patients enrolled between 2013-16 (N = 1,093, 1-17 recruiting hospitals), we found a small shift towards the Dutch ref. population (N = 74,692) for patients enrolled between 2017-19 (N = 4,653, 17-52 hospitals) in terms of age at diagnosis (mean 64.6±10.2 years in 2013-16, 65.2±10.8 in 2017-19, and 69.5±10.9 in the ref. group), sex (65% males in 2013-16, 61% in 2017-19, and 56% in the ref. population), location of primary tumor (56% rectum in 2013-16, 40% in 2017-19, and 31% in the ref. population) and TNM stage (35% stage I-II in 2013-16, 41% in 2017-19, and 48% in the population). Conclusions: Over the past years, the number of PLCRC recruiting centers and participating patients, with high consent rates for PROs, steeply increased. Further improvements in recruitment methodologies and multidisciplinary enrolment of patients will continue to enhance PLCRC’s representation of the “real-world” and its ability to supplement trial-based evidence.

scholarly journals The Prospective Dutch Colorectal Cancer (PLCRC) cohort: real-world data facilitating research and clinical care

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Jeroen W. G. Derksen ◽  
◽  
Geraldine R. Vink ◽  
Marloes A. G. Elferink ◽  
Jeanine M. L. Roodhart ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Real World ◽  
Clinical Care ◽  
Daily Practice ◽  
Additional Patient ◽  
Real World Data ◽  
World Data ◽  
Oncology Research ◽  
Netherlands Cancer Registry ◽  
Patient Reported

AbstractReal-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.

scholarly journals Generating patient reported outcome norms for an EU cancer population using real world data (FACT-G)

2017 ◽  
Vol 28 ◽  
pp. v518 ◽  
Author(s):  
A. Rider ◽  
S. Simpson ◽  
B. Bennett ◽  
K. Byrne ◽  
P. Hallworth ◽  
...  
Keyword(s):  
Real World ◽  
Patient Reported Outcome ◽  
Real World Data ◽  
World Data ◽  
Patient Reported

scholarly journals The gap in postoperative outcome between older and younger patients with stage I-III colorectal cancer has been bridged; results from the Netherlands cancer registry

2019 ◽  
Vol 116 ◽  
pp. 1-9 ◽  
Author(s):  
Nelleke P.M. Brouwer ◽  
Thea C. Heil ◽  
Marcel G.M. Olde Rikkert ◽  
Valery E.P.P. Lemmens ◽  
Harm J.T. Rutten ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
The Netherlands ◽  
Cancer Registry ◽  
Postoperative Outcome ◽  
Stage I ◽  
Younger Patients ◽  
Netherlands Cancer Registry

scholarly journals Long Term Real-World Outcomes of Trifluridine/Tipiracil in Metastatic Colorectal Cancer—A Single UK Centre Experience

2021 ◽  
Vol 28 (3) ◽  
pp. 2260-2269
Author(s):  
Daniel Tong ◽  
Lei Wang ◽  
Jeewaka Mendis ◽  
Sharadah Essapen
Keyword(s):  
Colorectal Cancer ◽  
Metastatic Colorectal Cancer ◽  
Real World ◽  
Systemic Treatment ◽  
Progression Free Survival ◽  
Median Number ◽  
Current Data ◽  
Real World Data

In the UK, Trifluridine-tipiracil (Lonsurf) is used to treat metastatic colorectal cancer in the third-line setting, after prior exposure to fluoropyrimidine-based regimes. Current data on the real-world use of Lonsurf lack long-term follow-up data. A retrospective evaluation of patients receiving Lonsurf at our Cancer Centre in 2016–2017 was performed, all with a minimum of two-year follow-up. Fifty-six patients were included in the review. The median number of cycles of Lonsurf administered was 3. Median follow-up was 6.0 months, with all patients deceased at the time of analysis. Median progression-free survival (PFS) was 3.2 months, and overall survival (OS) was 5.8 months. The median interval from Lonsurf discontinuation to death was two months, but seven patients received further systemic treatment and median OS gained was 12 months. Lonsurf offered a slightly better PFS but inferior OS to that of the RECOURSE trial, with PFS similar to real-world data previously presented. Interestingly, 12.5% had a PFS > 9 months, and this cohort had primarily left-sided and RAS wild-type disease. A subset received further systemic treatment on Lonsurf discontinuation with good additional OS benefit. Lonsurf may alter the course of disease for a subset of patients, and further treatment on progression can be considered in carefully selected patients.

scholarly journals A Real-World Rheumatology Registry and Research Consortium: The German RHADAR Registry (Preprint)

2021 ◽  
Author(s):  
Stefan Kleinert ◽  
Peter Bartz-Bazzanella ◽  
Cay von der Decken ◽  
Johannes Knitza ◽  
Torsten Witte ◽  
...  
Keyword(s):  
Real World ◽  
Patient Reported Outcomes ◽  
Closed Loop ◽  
Musculoskeletal Diseases ◽  
Closed Loop System ◽  
Real World Data ◽  
Patient Centered ◽  
Patient Reported ◽  
Integrated Medical Care ◽  
Research Consortium

UNSTRUCTURED Real-world data is crucial to continuously improve patients' management with rheumatic and musculoskeletal diseases (RMD). The German RHADAR registry encompasses a network of rheumatologists and researchers in Germany providing pseudonymized real-world patient data and allowing a timely and continuous improvement in RMD patients' care. The RHADAR modules allow automated anamnesis and adaptive coordination of appointments regarding individual urgency levels. Further modules focus on the collection and integration of electronic patient-reported outcomes in between consultations. The digital RHADAR modules ultimately allow a patient-centered, adaptive approach to integrated medical care starting as early as possible in the disease course. Such a closed-loop system consisting of various modules along the whole patient pathway enables comprehensive and timely patient management in an unprecedented manner.

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