Vanessa Leigh Merker, Ph.D.
Instructor in Neurology
Massachusetts General Hospital
Massachusetts General Hospital
55 Fruit St
Boston MA 02114
|Brown University||BS||Cognitive Neuroscience|
|Boston University School of Public Health||PhD||Health Services Research|
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 neurofibromatoses. To do this, I use qualitative and mixed methods to understand patients healthcare needs and experiences; I develop and use 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.
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to make corrections and additions.
Clinical Research Award 2020-10-001
Mar 1, 2021 - Feb 28, 2023
Children's Tumor Foundation
Incorporating FDA Guidance on Patient-Focused Drug Development in NF: A Pilot Study of Qualitative Patient Interviews within NF Clinical Trials
Role Description: The goal of this study is to use longitudinal, qualitative interviews with NF2 patients enrolled in the brigatinib sub-study of the INTUITT-NF2 clinical trial to 1) improve the trial’s ability to assess the efficacy of brigatinib in treating progressive NF2-related tumors, 2) assess the content validity of and meaningful change within the NF2 Impact on Quality of Life scale; and 3) identify best practices for embedding qualitative interviews into multicenter NF clinical trials
Locally Initiated Project 19-004
Jun 1, 2019 - Jan 31, 2019
Veterans Administration Center for Healthcare Organization and Implementation Research
Understanding the Impact of Veteran Engagement in Research
Role Description: The goal of this project was to undertake a qualitative evaluation of the Veteran Consulting Network to understand the impact of Veteran engagement in health services research and identify potentially measurable outputs of patient engagement.
Young Investigator Award 2015-01-005
Aug 1, 2015 - Jul 31, 2018
Children’s Tumor Foundation
Understanding Diagnostic Delay in Schwannomatosis: A Patient-Centered Approach
Role Description: The goal of this project was to understand patient, provider, and healthcare-system level factors associated with diagnostic delay in schwannomatosis using a mixed-methods, patient-centered approach
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