Research Abstract

I'm a health services researcher committed to improving healthcare for people with rare diseases by leveraging information collected directly from patients and their family members. My research focus is improving the accessibility, quality, and patient-centeredness of care for patients with the neurofibromatosis and schwannomatosis. To do this, I use qualitative and mixed methods research to understand patients healthcare needs and experiences; I develop and use patient reported outcome measures in clinical trials; and I engage patients as partners in the design and conduct of my research. I am highly experienced in neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis, and have broad interests across other rare, neurological and genetic conditions.