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"My name is Annet van Royen-Kerkhof, and I was trained as paediatrician-immunologist/rheumatologist. Currently, I am head of the Department of Pediatric Immunology, Rheumatology, Infectiology, Hematology and StemCell Transplantation of the Wilhelmina Children’s Hospital of the University Medical center in Utrecht, the Netherlands. The Wilhelmina Children’s Hospital is a tertiary referral center for systemic auto-immune disease in children, with options for intensive treatment such as stem cell transplantation. My clinical work is focussed on improvement of care for children with juvenile dermatomyositis by developing tools to better monitor disease activity. This work is closely interrelated with fundamental research from the Laboratory of Translational Immunology of the UMCU, and the Child Development & Exercise Center of the UMCU. In close contact with patient organisations we focus on patient driven research, resulting in projects on personalized care and regarding symptoms of Fatigue and Fatigability. From 2010-2016 I was chair of the JDM working party of PReS (Pediatric Rheumatology European Society). As a working party we participated in the SHARE project, to improve and standardize the care for children with Paediatric Rheumatic Diseases throughout Europe. Consensus-based guidelines for treatment and diagnosis of juvenile dermatomyositis were developed. In the current project on identification of biomarkers large centers in the world are involved (London, Liverpool, Toronto, Bethesda)."
"My name is Femke van Wijk, and I was trained as a biomedical scientist. Currently, I work as an Associate Professor at the University Medical Centre Utrecht and my translational immunology research group is imbedded in the Laboratory of Translational Immunology. I have always been fascinated by how well the immune system is regulated, how adaptable it is, but also how badly it can go wrong. My research is therefore focused on human immune regulation in chronic inflammatory disease, addressing conceptual and mechanistic immunological questions with a strong link to the clinic, both in paediatric and adult patients. By unravelling the key immunological pathways that are involved in the chronic inflammatory processes we aim capture immune fingerprints and bio-profiles of disease and disease subtypes. The strong collaboration with clinicians also stimulates translation of our findings into clinical or diagnostic applications, e.g. tools to monitor disease or predict disease or treatment outcomes. Together with Dr. Annet van Royen MD, and Felicitas Belutti-Enders MD (former PhD student) our group has identified and validated a novel biomarker for juvenile dermatomyositis (JDM) and we have invested in building a national biobank for JDM samples. We have now established a JDM research program that involves PhD student Judith Wienke MD, and exchange research fellow and pediatric rheumatologist Butsabong Lerkvaleekul MD from Bangkok University in Thailand, and many national and international collaborations. For JDM we successfully identified biomarkers (Galactin-9 and IP-10) for monitoring disease activity. The current grant will enable us to follow-up children with JDM for a longer period of time, to see if galactin-9 can be used as a potential predictor of a flare in JDM disease activity, as was seen in pilot data. Potentially galectin-9 can be used to guide tapering of corticosteroids, which may enable personalized care. We hope that in the next five years we will be able to design an individual treatment scheme for very child with JDM, based on an algorithm, including results of disease activity at onset, skin scores, autoantibodies and biomarkers. Thus, functional outcome will be improved and overtreatment (mainly with corticosteroids) can be minimized." JOIN US AT A WALK NEAR YOUCome together to support children, teens, and young adults fighting Juvenile Myositis. REGISTER HEREFind a Walk Strong® event near you:
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