Assistant Investigator Cancer Center, Mass General Research Institute

Assistant Professor of Neurology Harvard Medical School

clinical trials; health services; health services accessibility; healthcare delivery; healthcare quality; neurofibromatoses; neurofibromatosis 1; neurofibromatosis 2; outcomes research; patient engagement; patient reported outcomes; qualitative methods; rare cancers; rare diseases; rare genetic diseases; rare neurogenetic diseases; rare neurological disorders; schwannomatosis I am a health services researcher committed to improving healthcare delivery 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 rare diseases like neurofibromatosis.  To do this, I use qualitative and mixed methods to understand patients’ healthcare needs and experiences; I develop and analyze patient reported outcome measures for use 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 neurology and oncology.