25,000th Patient Joins the Dutch Prospective National Colorectal Cancer Cohort

The PLCRC envisions a future where doctors can offer personalized treatment to every cancer patient – maximizing each patient’s chance for a good outcome. To accomplish this, the PLCRC aims to help doctors to consider various biomarkers (measurable substances in the body such as blood values ​​and specific tumor features) to predict the likelihood that patients will respond to a given cancer therapy – looking deeper than only patient and tumor characteristics. This information can then be used to determine which treatment best suits each individual patient. 

Significant strides have already been made toward this goal, but for too many patients it is still difficult to pinpoint which treatment is most appropriate for them. Why is this, and how can we improve it? 

From One-Size Fits All to Personalized Predictions

Current healthcare guidelines are based on the results of clinical trials investigating the use of new cancer medications, or combinations of medications. These trials primarily include young and fit patients – a small segment of the total population. However, the results from these studies are then used to inform the treatment of all patients, including those who are older and less fit than those in the original clinical trials. Further complicating the story, scientists have found that there are many different subgroups of colorectal cancer patients that may respond differently to given therapies. In short: every patient is unique. Therefore, more personalized approaches are needed to better predict which patients will benefit from which treatments.

To make these personalized predictions, it is key to conduct research in large and diverse groups of patients – not only young and fit patients. This is why the PLCRC colorectal cancer cohort was initiated by prof. Miriam Koopman in 2013, with support of the Dutch Colorectal Cancer Group (DCCG). Patient Cohorts are large groups of people from whom data is collected over a long period. The PLCRC collects colorectal cancer patients’ data at various times after diagnosis and at every stage of the disease. By participating in the PLCRC, patients make a significant contribution to research. Participating patients consent to the use of their medical data for scientific research, and also have the option to donate blood and tissue for research and to complete quality of life questionnaires. Researchers can then use these data to answer a wide range of scientific questions. 

Real-World Data from Real Patients

The PLCRC cohort now spans across the entirety of the Netherlands and has reached an impressive 25,000 study participants. This is a huge milestone and represents a wealth of diverse patient data from clinical practice. Scientists refer to this type of data as Real World Data (RWD). 

RWD data can be used to answer a wide range of different research questions and policy issues. This contributes to our collective knowledge about colorectal cancer, its treatment, and its impact on the quality of life of patients living with and after colorectal cancer. Importantly, RWD is also essential for better predicting which patients will benefit from a particular treatment, allowing for more personalized treatment. 

Currently, more than 90 different scientific studies have used or are using PLCRC data or the PLCRC infrastructure, demonstrating the importance and wide impact of PLCRC and RWD for research. Areas of focus include the impact of exercise, nutrition, and different lifestyle factors during and after treatment on patients’ outcomes, and the potential predictive value of circulating tumor DNA in the blood on cancer recurrence.

A Patient Cohort at the Forefront of (Inter)National Research

At the national level, the PLCRC serves as a model for initiating and managing cohorts of patients with other types of cancer, including within the Oncode Accelerator program. On the global scale, the PLCRC has also received considerable international attention, and is considered a unique example of a successful cohort with direct impact for patients. The PLCRC also actively contributes to research worldwide by openly sharing lessons learned. 

As well as reaching an impressive 25,000 participants in collaboration with Dutch hospitals, all hospitals across the Netherlands are now involved in the PLCRC. This is a second crucial milestone, as it means that any colorectal cancer patient anywhere in the Netherlands can participate in the PLCRC if they wish to. 

The PLCRC thanks all patients, healthcare professionals, and partners – including the Dutch Colon Cancer Foundation (Stichting Darmkanker), researchers, funding agencies, the Netherlands Cancer Registry (NKR) and the Netherlands Comprehensive Cancer Organisation (IKNL), pharmaceutical companies, government organizations, and more – that have made this success possible.