Speaker: Dr. Vanessa Merker

Moderator: Dr. Hans Katzberg

Educational Objectives: 

1) To understand the potential role of qualitative patient interviews within clinical trials for rare neurological diseases 

2) To understand the facilitators to and impact of engaging patients and their family members in clinical trial design and outcome selection

Dr. Vanessa L. Merker is a health services researcher at the Pappas Center for Neuro-Oncology at Massachusetts General Hospital (MGH), and an Instructor in Neurology at Harvard Medical School.   Dr. Merker's research leverages insights from patients and their family members to improve clinical trial design and health care delivery for rare, neurological disorders diseases, with a focus on improving the accessibility, quality, and patient-centeredness of care for neurofibromatosis and schwannomatosis (NF/SWN).  With grant support from multiple non-profit foundations, including the Children's Tumor Foundation, NF Northeast, and the Neurofibromatosis Therapeutic Acceleration Program, Dr. Merker uses qualitative patient interviews to develop patient-reported outcome measures for and understand the preferences of patients within NF/SWN clinical trials.  As chair of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration Patient Representative working group, she also leads a program to involve 70+ patients and family members in NF/SWN clinical trial design.  Dr. Merker received her PhD in Health Services Research from the Boston University School of Public Health, and completed further post-doctoral training at the Veterans Administration Center for Healthcare Organization and Implementation and Research in Bedford, MA.