Vanessa Merker | Harvard Catalyst Profiles

I'm a health services researcher committed to improving healthcare delivery and research 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 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.

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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.

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Research Award (Merker) Dec 1, 2024 - Nov 30, 2027

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: PI
Research Award (Martin) Feb 1, 2024 - Jan 1, 2027

Neurofibromatosis Therapeutic Acceleration Program

Assessment of Tumor-Related Disfigurement and Appearance Concerns in Neurofibromatosis Type 1

Role Description: The goal of this study is to develop and validate a patient-reported disfigurement rating scale and measure of appearance concerns to assess change in tumor-related disfigurement in plexiform neurofibroma (pNF) or cutaneous neurofibroma (cNF) clinical trials in people with neurofibromatosis 1.

Role: Co-PI
Clinical Research Award 2023-10-003 (Merker, Vanessa) Oct 1, 2023 - Sep 30, 2025

Children's Tumor Foundation

Demonstrating Clinical Benefit of New Treatments for NF2-related schwannomatosis: Developing A More Comprehensive and Sensitive Measure of Quality of Life for NF2 Clinical Trials

Role Description: The goal of this study is to develop and validate a new patient-reported measure of NF2-specific quality of life, including 1) qualitatively demonstrate the content validity of the measure using cognitive debriefing interviews, 2) quantitatively demonstrate the reliability and validity of the measure using a cross-sectional online survey, and 3) quantitatively assess the sensitivity to change of the measure in participants receiving experimental therapies in the INTUITT-NF2 clinical trial.

Role: PI
Broad Pragmatic Study AD-2022C2-24790 (Merker) Aug 1, 2023 - Apr 1, 2027

PCORI

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: mPI
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: PI
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

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