VASCERN Spotlights: Professor Leo Schultze Kool
VASCERN has had a great start in its first year and I really hope that we can continue the progress and keep the enthusiasm alive. We have a lot of things to do and we can really improve the quality of treatment and care for rare disease patients if we keep the momentum going.
In this month’s VASCERN Spotlights you will meet Professor Leo Schultze Kool, an interventional radiologist from Nijmegen, The Netherlands. Professor Schultze Kool, Chair of the VASCERN Patient Registry Working Group and Co-Chair of the Vascular Anomalies Working Group (VASCA-WG), shares with us his hopes for our ERN, now in its second year of operation, and the importance of setting up rare disease registries that are FAIR (Findable, Accessible, Interoperable and Reusable).
1) What disease(s) do you specialize in (or what is your medical specialty) and what interested you in this field?
I am an interventional radiologist with a strong focus on vascular malformations. I initially trained as a radiologist and then developed an interest in interventional radiology, which at that time was a new and emerging specialty within radiology. It is a technical and rapidly evolving specialty which basically makes it possible to replace a lot of the surgical procedures with minimally invasive techniques that provide better outcomes, shorter hospital stays and quicker recovery times. Radiology is classically a supportive specialty; you look at images and give advice to the other physicians, but as an interventional radiologist we are often the treating physician. One of my goals was to develop interventional radiology as a clinical specialty. I also started the vascular malformation team in Leiden and then after my appointment in Nijmegen at the Radboud University Medical Centre, I joined the already existing vascular malformation group (called HECOVAN). The HECOVAN team is a group of health care professionals representing 12 different disciplines. The collaboration within the group is fantastic. I really believe that treatment should be done within multidisciplinary teams, and that the mono-disciplinary form of treatment (i.e. one doctor treating a patient) will disappear in the future and will be replaced by these treatment teams, as is seen in many vascular malformation teams already.
2) How did you become involved in VASCERN?
I became involved through Prof Miikka Vikkula and Prof Laurence Boon (VASCA-WG), as we were both looking to develop a close collaboration between our two vascular malformation centres when the call for the ERNs came out. Together we looked into this call and thought it was a great opportunity to unite the best vascular malformation centres in Europe. As Miikka explained, it was decided to join VASCERN, the network of rare multisystemic vascular diseases. In the end it has worked out wonderfully as even between the different rare disease working groups (RDWGs), a close collaboration has formed (such as between the VASCA and HHT WGs) due to the fact that there are many similarities between the different diseases.
3) What is your greatest hope for VASCERN?
VASCERN has had a great start in its first year and I really hope that we can continue the progress and keep the enthusiasm alive. We have a lot of things to do and we can really improve the quality of treatment and care for rare disease patients if we keep the momentum going. In order achieve our objectives in this second year we really need to take care that the initial enthusiasm from all members is maintained.
4) What challenges do you face as a healthcare professional in the rare disease field?
The main challenges are in the management area, at the level of the national governing bodies, the hospitals and healthcare providers. In general, I am not convinced that the importance of the ERNs is appreciated to the same extent by everybody. At the country level (healthcare insurance and health ministry) there is often more focused on the specific country’s interests, while the goal of the ERNs is to make sure that there is optimal care for all patients in Europe. Also I am not convinced that all the stakeholders see this goal and see the importance of the collaboration between the HCP’s and ERN’s for further development of new treatments and for assuring optimal care for all patients. We at the Radboud are quite lucky as the university is involved in 13 ERNs, so our hospital is aware of the ERNs and their mission and is very supportive, but in other hospitals (in the Netherlands and elsewhere) this is not always happening and many ERNs have to struggle for recognition, support and funding.
What I am really proud of is that I now have a nationally and internationally renowned clinical interventional radiology department at Radboud University Medical Center. We have a very central role in the patient care pathways and also see the patient as a partner.
5) What have you accomplished in your medical career that you are most proud of?
What I am really proud of is that I now have a nationally and internationally renowned clinical interventional radiology department at Radboud University Medical Center. We have a very central role in the patient care pathways and also see the patient as a partner. While my various research activities into new lines of treatment are important, this is what I am most proud of as it took almost 30 years to set it up and have everyone convinced that this is the best way to go.
6) Are you currently involved in any research projects or clinical trials? If so, can you please describe them briefly?
Currently I am involved in a trial of a monitoring tool for angiogenesis activity in vascular malformations. We developed a positron-emission tomography (PET)-tracer which can be linked to integrin (one of the markers for angiogenesis activity). We have just started the first clinical trials with close collaboration from Prof Vikkula’s (VASCA-WG Chair) and Prof Shovlin’s (HHT-WG Chair) teams. The hope is that if the tracer is sufficiently validated and proved to be sufficiently sensitive we will have a tool available for the evaluation and development of new medications or new techniques.
7) What VASCERN activities do you participate in?
I am co-Chair of the VASCA-WG and I am also Chair of the Patient Registry-WG. I’m not really what you would call a “computer guy”, so the registries didn’t have my full attention in the beginning. However, as the importance of the rare disease registries is so large, my interest, along with others at my HCP, soon started to grow and I became Chair of the group. I really feel that if we set up registries in the proper way, using the FAIR (Findable, Accessible, Interoperable and Reusable) principles, it will give us access to a wealth of information. We already had one 4th Year Medical Student (from Hammersmith, Imperial College, UK) who spent 4 weeks in Nijmegen and Leiden (FAIR group of Marco Roos) learning about the principles of FAIRification. The recently approved European Joint Programme on Rare Diseases (EJP-RD) grant will offer us further possibilities to extend the work done on the registries. Also the pilot in the VASCA-WG with a FAIR-based common dataset registry has started. If proven successful, the model could also be implemented in the other WG’s.
8) What are the main achievements of VASCERN to date? What challenges does VASCERN still face?
The main achievement is having all of the HCPs on board and having the healthcare professionals put time and effort into the various projects. Everyone was eager to join when we started and what developed in the first year was a lot of enthusiasm. I can only talk for the VASCA-WG, but the collaboration is great with a lot of projects underway (e.g. patient pathways for several conditions, the start of the VASCA pilot registry etc). I think that the future looks good if we can keep this enthusiasm going. The biggest challenge will be spreading the knowledge to outside the ERN. The main goal was to improve care for patients in all of Europe, which means that both governmental and insurance bodies need to be made aware of these developments and there has to be funding made available in order to do this.
