Dr. Henrike Karim-Kos studied Human Nutrition and Epidemiology at Wageningen University. She specialized in the role of nutrition in the development of cancer. She then switched to the Dutch Cancer Registry (NKR): how often does cancer occur, in which people, is there a difference in treatment and prognosis? In her PhD research at ErasmusMC, the focus was mainly on measuring the improvements for cancer patients in relation to prevention, and changes in diagnostics and therapy.
In 2014 she had the opportunity to do research at Statistik Austria in Vienna using the national cancer registry. ‘That’s were I rolled into pediatric oncology,’ Henrike says. ‘For example, I studied how often childhood cancer occurred in Austria and whether we could find trends. I realized that we also have that data in the Netherlands, but that little or nothing had been done with it yet.’
In 2016, thanks to a KiKa project, she could start working with the Dutch data, in collaboration with Rob Pieters and Leontien Kremer. She joined the Princess Máxima Center on a part-time basis, focusing on the Dutch Cancer Registry, which has complete data on childhood cancer from 1989. This data is managed by the Netherlands Comprehensive Cancer Organisation (IKNL), where Karim-Kos also has a part-time appointment.
Initially, Henrike Karim-Kos will mainly look at which tumors occur in children with cancer, and survival rates. But there is a lot more information available to children and parents, she believes. ‘Our aim is to be able to say for each child based on the type of tumor: this is how common it is, and this is the outlook. And in more detail in the future, for example: how much better have your chances of survival become if you are doing well two years after diagnosis?’
Henrike Karim-Kos's research group has two main goals. First: to provide an overview, also known as ‘cancer surveillance’. Secondly, Henrike sees opportunities to connect childhood cancer care more closely to oncological care for young adults: ‘With my epidemiological approach, I can highlight the groups for whom we need to do more. For example, the figures from the cancer registry show that young people aged 18-24 often have lower survival than teenagers aged 15-17 with the same form of cancer. And that the survival of 0-year-olds has actually not improved since the period between 2000-2009.’
The good thing about these analyses – but what makes them complex – is that continuous progress is being made in pediatric oncology. For example, Karim-Kos recently published a study that showed that the survival of children with cancer in the Netherlands has improved significantly since the 1990s. ‘As an epidemiologist, I hover above the day-to-day,’ she explains. ‘Doctors also appreciate the perspective I can offer them. Perhaps their most recent ten patients are top of mind for them, often the children with a poor outlook. My research shows the bigger picture, the context that tells us whether we’re making progress. With an epidemiological view we will soon be able to evaluate very nicely what the Princess Máxima Center means for children with cancer. By offering proper insight into the historical figures, we offer the benchmark for later comparison.’