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SUMMARY:Introducing the New LRG Patient Registry
DESCRIPTION:REGISTERJoin The Life Raft Group for an introduction to the NEW LRG Patient Registry on Thursday\, August 20th at 12:00 PM. Denisse Evans\, Senior Director of Data Management & Research\, and Ian Hill\, Data & Registry Systems Analyst\, will walk through the new features fo the Registry and share how these enhancements are designed to better serve both patients and researchers in the GIST community. \nAttendees will learn how this redesign strengthens data collection\, improves the patient experience\, and supports research efforts aimed at advancing understanding of disease progression\, treatment outcomes\, and long-term survivorship. Whether you’re a patient\, caregiver\, researcher\, or advocate\, this webinar will offer valuable insight into how the Registry is evolving to drive meaningful progress in GIST research and care. \nThese webinars are for informational purposes only and should not replace professional medical advice. Always consult your healthcare provider before making any treatment or lifestyle changes. \nAbout Our Presenters:\n \nDenisse Evans\nSenior Director of Data Management & Research \n \nAs Senior Director of Data Management & Research at the Life Raft Group (LRG)\, Denisse Evans brings a dynamic blend of scientific expertise\, strategic leadership\, and a passion for patient advocacy to the forefront of Gastrointestinal Stromal Tumor (GIST) research. Her career has been dedicated to leveraging data-driven insights to improve patient outcomes\, empower communities\, and drive innovation in rare cancer research. \nShe specializes in designing and implementing robust study protocols\, with a focus on Patient-Reported Outcomes (PRO) and biomedical data analysis. As Principal Investigator of the Natural History Study for the largest GIST cohort globally\, she leads groundbreaking research efforts to uncover insights into disease progression\, treatment outcomes\, and long-term survivorship. She spearheaded the development of the newly rebuilt LRG Patient Registry\, guiding its redesign to better serve both patient and scientific communities and strengthening its role as a foundational resource for GIST research. In addition to managing the Registry\, she heads the organization’s Tissue Bank\, a vital resource for advancing translational research. Her leadership extends to fostering collaborations with premier medical and academic institutions\, enabling multi-institutional studies that drive impactful discoveries in the field. \n \nIan Hill\nData and Registry Systems Associate\n \nIan Hill\, Data and Registry Systems Analyst at The Life Raft Group\, brings a career path that reflects the blending of technical skill\, analytical thinking\, and a strong desire to make a difference in people’s lives. With a Bachelor of Science in Biology from Ramapo College of New Jersey and a Master of Data Science from the same institution he built a strong foundation in understanding complex systems that naturally evolved into his pursuit of data science. In his role\, he brings together his technical training\, scientific background\, and personal values to support registry development\, clean and analyze clinical datasets\, and design reports and dashboards that make data meaningful for researchers\, clinicians\, and patients alike. \nHe played a major part in bringing the technical aspects of the newly rebuilt LRG Patient Registry to life\, helping translate its vision into a functioning system built to serve patients and researchers alike. His ability to translate raw information into actionable insights highlights both his technical expertise and his empathy for those who rely on the data to guide treatment and care. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/introducing-the-new-lrg-patient-registry/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
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