The International Society for Pediatric Oncology (SIOPE) has established a multinational Registry in an effort to improve our understanding and treatment for Diffuse Intrinsic Pontine Glioma (DIPG), a rare lethal pediatric brain tumor. The SIOPE DIPG Registry is composed of clinical, imaging and biologic data from a collaboration of countries across Europe and the world.
My PhD is two parts, one part building the SIOPE Registry infrastructure and expanding the network of countries/institutions contributing data and secondly, to conduct collaborative research projects using SIOPE data resources. My research will investigate therapeutic aspects and diagnostic characteristics of DIPG, as well as parent/patient experiences with the disease. These projects aim to increase our understanding, improve care and ultimately aid in developing effective therapies for patients suffering from DIPG.