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).
Access On-Demand Educational Opportunities
- Setting a Patient-Centered Outcomes Research Agenda in HCT: Priorities in Education, Care Delivery; and Financial Burden
- Setting a Patient-Centered Outcomes Research Agenda in HCT: Priorities in Sexual, Physical and Emotional Health
- Patient Reported Outcomes Research in HCT
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:
- Patient, caregiver and family education and support (pre-, during- and post-HCT)
- Physical health and fatigue
- Emotional, cognitive and social health (including return to work/school)
- Sexual health and relationships
- Models of care delivery/survivorship and late effects
- Financial burden (out-of-pocket costs for care, prescriptions and lost wages)
- Steering Committee
- NMDP Staff Liaisons