Vanessa Merker

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Assistant Professor

Massachusetts General Hospital

United States

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About

Dr. Vanessa Merker is an Assistant Professor at Massachusetts General Hospital, USA. Her research primarily focuses on neurofibromatosis and schwannomatosis, with recent publications addressing clinical trial design, patient perspectives, and health service interventions in these rare diseases. She also explores the impacts of health disparities and the COVID-19 pandemic on specific patient populations, including those with Down syndrome.

Recent Grants

Grant: Close

Tailoring an Online Platform to Promote Evidence-Based Care in Children and Adults with Neurofibromatosis 1 to Address Medical and Social Barriers to Care

Open Date: 2023-06-01

Close Date: 2026-05-01

Grant: Close

Expanding Patient-Centered Outcome Assessment in an NF Consortium Trial of Selumetinib plus Cabozantinib for Growing or Symptomatic Plexiform Neurofibromas: A Qualitative Interview Study

Open Date: 2023-03-01

Close Date: 2026-02-01

Grant: Close

An Online Platform to Promote Evidence-Based Care for Underserved Patients with Neurofibromatosis 1

Open Date: 2023-01-01

Close Date: 2025-12-31

Grant: Close

Incorporating FDA Guidance on Patient-Focused Drug Development in NF: A Pilot Study of Qualitative Patient Interviews within NF Clinical Trials

Open Date: 2021-03-01

Close Date: 2023-03-01

Grant: Close

Understanding the Impact of Veteran Engagement in Research

Open Date: 2019-06-01

Close Date: 2019-12-01

Articles (15)

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2021

Collaborators (5)

Marco Giovannini

University of California, Los Angeles

UNITED STATES

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Amanda Bergner

Professor of Genetic Counseling

Columbia University

UNITED STATES

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Justin Jordan

University of Texas Southwestern Medical Center

UNITED STATES

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Heather L Thompson

Professor

California State University Sacramento

UNITED STATES

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Andrea Gross

National Cancer Institute

UNITED STATES

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Vanessa Merker

Research Interests

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Recent Grants

Articles (15)

Self-reported access to specialty clinics and receipt of health surveillance among U.S. patients with neurofibromatosis 1: a national survey

Advancing neurofibromatosis and schwannomatosis clinical trial design: Consensus recommendations from the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration

Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: Results from an anonymous online survey

Recommendations for assessing appearance concerns related to plexiform and cutaneous neurofibromas in neurofibromatosis 1 clinical trials

Health services interventions to improve the quality of care in rare disease: a scoping review

Views on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds.

Ten-Year Follow-up of Internal Neurofibroma Growth Behavior in Adult Patients With Neurofibromatosis Type 1 Using Whole-Body MRI

Indicators of health in Down syndrome: A virtual focus group study with patients and their parents

Awareness and agreement with neurofibromatosis care guidelines among U.S. neurofibromatosis specialists

Understanding barriers to diagnosis in a rare, genetic disease: Delays and errors in diagnosing schwannomatosis

Updated diagnostic criteria and nomenclature for neurofibromatosis type 2 and schwannomatosis: An international consensus recommendation.

Evaluating the Impacts of Patient Engagement on Health Services Research Teams: Lessons from the Veteran Consulting Network

Design of a randomized, placebo-controlled, phase 2 study evaluating the safety and efficacy of tanezumab for treatment of schwannomatosis-related pain

Impact of the coronavirus pandemic on mental health and health care in adults with neurofibromatosis: Patient perspectives from an online survey

Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials

Collaborators (5)

Marco Giovannini

Amanda Bergner

Justin Jordan

Heather L Thompson

Andrea Gross

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