In this edition of "Meet the members", we interview Samuel Gröschel, child neurologist at the University Children's Hospital in Tübingen, Germany and one of the coordinators of the ERN-RND Leukodystrophies Disease Group (DG). He will tell us a bit more about his work in the hospital, within ERN-RND and his expectations for the network.
1.What is your profession (department, affiliation, etc.) and your medical expertise or specific field of interest/why?
I am a child neurologist, working in the University Children's Hospital in Tübingen, Germany. My area of expertise is in rare neurological disorders in childhood, especially in leukodystrophies. I've started my interest in leukodystrophies already during medical school in Göttingen, continuing in London at Great Ormond Street and now have been conducting this work in Tübingen, with a focus on Metachromatic Leukodystrophy.
2. What do you like most about your work/biggest challenge specially in regards to working on rare diseases?
It is a privilege to witness an era of new developments for treatment of rare neurological diseases in childhood. As a clinician, I see my contribution in research for trial readiness, describing the natural history, establishing meaningful outcome parameters and biomarkers as well as building disease databases. In my view, exchanging expert knowledge and working in networks is crucial for this development.
3. How do you participate in ERN-RND?
I am coordinating the disease group "leukodystrophies" in the ERN-RND, together with Dr Caroline Sevin, where we develop and exchange clinical standards for leukodystrophies. In addition, ERN-RND provides a valuable IT platform for secure discussions of clinical cases, where I participate as a leukodystrophy expert.
4. What are your expectations for the network?
By facilitating access to specialised expert knowledge and exchange between expert centers for rare neurological diseases, the ERN-RND network can contribute to improved patient care and clinical research for trial readiness.
5. How do you think patients and clinicians can work together?
On the one hand, ERN-RND can improve patient care and provide families and local physicians with better access to expert centers. On the other hand, we as clinicians often experience that parents of affected children support, motivate and even initiate research for trial readiness, also via patient advocate groups. For me, this productive interaction between clinicians and patients is a big motivation for my work.
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