Patient Centered Research Agenda

Learn about this project, those involved, and access working group materials.

Engaging Patients in Developing a Patient-Centered HCT Research Agenda

The National Marrow Donor Program® (NMDP)/Be The Match® was awarded a two-year Eugene Washington Engagement Award by the Patient-Centered Outcomes Research Institute (PCORI). PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that provides patients, their caregivers, and clinicians with the evidence needed to make better-informed health and health care decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work. 

This NMDP/Be The Match project, titled Engaging Patients in Developing a Patient-Centered HCT Research Agenda, is managed through our research program, the Center for International Blood and Marrow Transplant Research® (CIBMTR®) Health Services Research (HSR).

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Project Leadership

Project lead: 

  • Linda Burns, M.D., Vice President and Medical Director, Health Services Research, NMDP

Project team: 

  • Ellen Denzen, M.S., Senior Manager, Health Services Research, NMDP
  • David Vanness, Ph.D., Associate Professor of Population Health Sciences, University of Wisconsin School of Medicine and Public Health
  • Navneet Majhail, M.D., M.S., Director, BMT Program, Professor of Medicine, Cleveland Clinic 
  • Gloria Gee, BMT recipient and her caregiver, Jeffrey Bender
  • Susan Kullberg, parent caregiver

Steering Committee 

The project Steering Committee includes the project team as well as the following members:

  • Beatrice Abetti, LCSW, Director, Information Resource Center, Leukemia & Lymphoma Society
  • Staci Arnold, M.D., MBA, MPH, Assistant Professor of Pediatrics, Emory University
  • Theresa Hahn, Ph.D., Professor of Oncology, Roswell Park Cancer Institute
  • Ann Haight, M.D., Pediatric Hematologist/Oncologist, Children’s Healthcare of Atlanta
  • Mary Horowitz, M.D., M.S., Chief, Division of Hematology and Oncology, Chief Scientific Director for CIBMTR, Medical College of Wisconsin
  • Shirley Johnson, M.S., MBA, RN, Chief Nursing Officer, City of Hope
  • C. Fred LeMaistre, M.D., Vice President and Physician-In-Chief of Hematology, Sarah Cannon
  • Elizabeth Murphy, RN, Ed.D., Vice President, Patient and health Professional Services, NMDP
  • J. Douglas Rizzo, M.D., M.S., Professor of Medicine, Senior Scientific Director for CIBMTR, Medical College of Wisconsin
  • Wael Saber, M.D., M.S., Assistant Professor of Medicine, Scientific Director for CIBMTR, Medical College of Wisconsin
  • Bronwen Shaw, M.D., Professor of Medicine, Scientific Director for CIBMTR, Medical College of Wisconsin
  • Karen Syrjala, Ph.D., Director of Biobehavioral Sciences, Co-Director of Survivorship Program, Professor, Fred Hutchinson Cancer Research Center
  • William Wood, M.D., MPH, Assistant Professor of Medicine, University of North Carolina

Working Groups

In order to prioritize patient-centered outcomes research questions which lend themselves to comparative effectiveness research, we will engage key stakeholders, patients, and caregivers in working groups which focus on 6 topic areas. 

Access materials for each working group: