Sophie Veldhuijzen van Zanten, MD
SIOPE DIPG Registry Research Project Manager
- Where are you from?/Where did you study?
I was born in Amsterdam (the Netherlands), but raised in a small town nearby, called Heemstede. When I was 17 I moved back to Amsterdam to attend medical school at the VU University. During medical school, I lived in Boston for 8 months for a research internship at the Dana-Farber Cancer Institute, under supervision of Prof. Andrew Kung. I also lived in Sweden for a summer to attend Swedish language and culture classes (my mother is Swedish), and I lived in Curacao (Dutch Caribbean) for 6 months for my rotations.
- What are you researching right now?
For the past four years I have had a full-time MD/PhD position at VU University medical center in Amsterdam, thanks to financial support by the Semmy Foundation. My PhD project was 100% focused on DIPG. Alongside the design and organisation of several multi-center studies for our local DIPG patients, the main focus of my work was to establishment the SIOPE DIPG Registry. For this, I have had the opportunity to meet many inspiring people from all over the world who are involved in DIPG research, such as patients and their parents, European colleagues united within the SIOPE DIPG Network, and overseas colleagues affiliated with the International DIPG Registry and the DIPG collaborative. During these years the scope of my work grew from local research studies to European collaborations and now also to fantastic transatlantic studies together with the International DIPG Registry team.
As of August 2016, I am working four days per week as an MD and one day per week as Postdoc to continue my research on DIPG. The main focus of the work will be the studies resulting from the Registries, with special interest in DIPG imaging (such as molecular drug imaging by means of PET), alternative drug delivery strategies (such as Convection-Enhanced Delivery and Ultrasound-mediated Drug Delivery) and Quality of Life/Palliative Care.
Besides work I am married to Alexander, who is an orthopedic surgeon. We have one daughter, Féline. We expect to welcome a second child around her second birthday in September of this year.
- Who is your all-time favorite scientist and why?
My favorite scientist is Marie Curie! Not because she was the first woman to win a Nobel Prize, and not because she was the only woman to win it twice in two different sciences, but because I admire her dedication to the science she conducted. I believe her success reflects her intrinsic love and curiosity for research, and her love for her husband Pierre Curie. Unfortunately, for their pioneering research on radioactivity, Marie and Pierre Curie had to pay the highest price. Both died from leukemia because they were not aware of the risks of radiation exposure.
- What do you like to do in your spare time?
In my spare time I love to be outside with family and fiends, preferably while doing sports. My favorite sports are biking, running, swimming, sailing and kite surfing (when not pregnant).
- Favorite food?
My favorite “food“ is related to my favorite moment of the week, which is a cappuccino with my family on Saturday morning. We have a nice coffee bar around the corner of our house. When we are there we order two cappuccinos for ourselves and a “baby-ccino” for Féline. The milk from her cup is always all around her mouth and up to her eyebrows, while we enjoy this moment of happiness. From my work with DIPG patients I have learned that these precious moments are priceless and irreplaceable.
- Why science?
Science is the only way forward! I think you should never fully rely on what big books, long standing paradigms, or other people tell you. I think you should always be curious about things we do not know yet, and always be triggered by things that can be improved.
- Who/What has inspired you to work on DIPG?
The patients and families have always been the primary inspiration for my work, because of their strength and courage. The disease itself triggered my curiosity, urged me to learn all about the pathophysiology, and challenged me to give all I have to investigate innovative hypothesis. The rarity of the disease brought me the challenge of setting up the SIOPE DIPG Registry together with colleagues from the SIOPE DIPG Network, in parallel to the International DIPG Registry. This provided me the opportunity to apply my enthusiasm for working together with scientists all over the world and to give all my energy for this one goal: to provide a better prospect for patients and families battling DIPG. Now that the Registries are up and running, I hope the research resulting from the data will bring us answers to the burning questions we have on DIPG.
- What are you reading right now?
The final version of my PhD thesis. The book will be published in the next few months and will be available to anyone interested upon request.
Title “Diffuse intrinsic pontine glioma: a multi-faceted and global view”
Part I (Chapters 2–6) encompasses the results of the first clinical studies for patients with DIPG in the Netherlands. These studies cover multiple aspects of DIPG, ranging from clinical symptoms, diagnostics and treatment strategies, to autopsy. In Part II (Chapters 7–13), the perspective of the research is expanded to a larger scope, both in time and in scale. Starting with historical cohort studies and extensive literature reviews to learn from the past, we reach out to our colleagues at a national, European and global level. These research studies are focused on subjects such as the Dutch approach to DIPG patients, predictors for DIPG survival, alternative drug-delivery techniques, palliative care and use of steroids in DIPG patients. Part III (Chapters 14 and 15) is focused on the organizational level and looks at the future of DIPG research. It describes the methodology and initiation of the SIOPE DIPG Registry in parallel to the International Registry, and describes the result of the first collaborative “long-term survivor study” (which will be published soon).
- If you could give one piece of advice to someone considering a research career, what would it be?
Start working the field of DIPG. Research into DIPG is There is a lot of work to do, a lot of great people to work with and fantastic patients and families to do it for.