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Vanessa Merker

Assistant Professor

Massachusetts General Hospital

United States

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Research Interests

Neurology

60%

Epidemiology

20%

Patient Perspective

40%

Randomized Controlled Trial

30%

Rare Disease

30%

Neurological Disorder

30%

Illness Management

20%

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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

Vanessa Merker

Assistant Professor

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Research Interests

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Recent Grants

Articles15

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

Collaborators5

Marco Giovannini

Amanda Bergner

Justin Jordan

Heather L Thompson

Andrea Gross

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