Harvard Catalyst Profiles

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Vanessa Leigh Merker, Ph.D.

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Brown UniversityBSCognitive Neuroscience
Boston University School of Public HealthPhDHealth 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.

The research activities and funding listed below are automatically derived from NIH ExPORTER and other sources, which might result in incorrect or missing items. Faculty can login to make corrections and additions.
  1. Broad Pragmatic Study 24790-B (Merker) Aug 1, 2023 - Apr 1, 2027
    An Online Platform to Promote Evidence-Based Care for Underserved Patients with Neurofibromatosis 1
    Role Description: The goal of this project is to modify “Down Syndrome Clinic to You” – a PCORI-funded online platform already proven as an effective, scalable tool to provide direct-to-public, personalized healthcare recommendations – for neurofibromatosis 1 (NF1) patients with limited access to specialty care. Aim 1: To test whether a customizable Patient/Caregiver Plan and Primary Care Provider Letter will increase patient and caregiver-reported, provider-driven health actions consistent with national guidelines compared to generic reminder notices. Aim 2: To identify implementation factors related to user satisfaction and platform effectiveness to inform future replications of the platform to additional rare diseases.
    Role: Multiple Principal Investigator
  2. New Investigator Award HT9425-23-1-0457 (Merker) Jun 1, 2023 - May 31, 2026
    Department of Defense - NFRP
    Tailoring an Online Platform to Promote Evidence-Based Care in Children and Adults with Neurofibromatosis 1 to Address Medical and Social Barriers to Care
    Role Description: The goal of this project is to understand gaps in the provision of NF1-related health screenings in primary care and tailor an online platform disseminating NF1 clinical care guidelines to make it more usable for subpopulations of NF1 patients/families with unique medical and social needs.
    Role: Principal Investigator
  3. (Merker) Mar 1, 2023 - Feb 28, 2026
    Neurofibromatosis Northeast
    Expanding Patient-Centered Outcome Assessment in an NF Consortium Trial of Selumetinib plus Cabozantinib for Growing or Symptomatic Plexiform Neurofibromas: A Qualitative Interview Study
    Role Description: The goal of this study is to add longitudinal, qualitative interviews with NF1 patients to the NF113 clinical trial to understand patients' perceptions of the benefits, risks, and tolerability of combination treatment for plexiform neurofibromas.
    Role: Principal Investigator
  4. Clinical Research Award 2020-10-001 (Merker, Vanessa) 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
    Role: PI
  5. Locally Initiated Project 19-004 (Merker, Vanessa) Jun 1, 2019 - Dec 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.
    Role: PI

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Funded by the NIH National Center for Advancing Translational Sciences through its Clinical and Translational Science Awards Program, grant number UL1TR002541.