Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science

Author:

Byams Vanessa R.1ORCID,Baker Judith R.2ORCID,Bailey Cindy3,Connell Nathan T.45ORCID,Creary Melissa S.67ORCID,Curtis Randall G.89ORCID,Dinno Alexis10,Guelcher Christine J.11ORCID,Kim Michelle12,Kulkarni Roshni13ORCID,Lattimore Susan1415ORCID,Norris Keri L.16,Ramirez Lucy17,Skinner Mark W.1819ORCID,Symington Susan20,Tobase Patricia21,Vázquez Esmeralda22,Warren Beth B.2324ORCID,Wheat Emily2324,Buckner Tyler W.24ORCID

Affiliation:

1. Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA

2. Center for Inherited Blood Disorders, Western States Regional Hemophilia Network, Orange, California, USA

3. Los Angeles Orthopaedic Hemophilia Treatment Center, Los Angeles, California, USA

4. Boston Hemophilia Center, Division of Hematology, Department of Medicine, Brigham and Women’s Hospital, Boston, Massachusetts, USA

5. Department of Medicine, Harvard Medical School, Boston, Massachusetts, USA

6. American Thrombosis and Hemostasis Network, Rochester, New York, USA

7. Department of Health Management and Policy, University of Michigan School of Public Health, Ann Arbor, Michigan, USA

8. Hematology Utilization Group Study (HUGS), University of Southern California, Los Angeles, California, USA

9. Patient Reported Outcomes, Burdens and Experiences (PROBE), Washington, DC, USA

10. The Oregon Health & Science University-Portland State University School of Public Health, Portland, Oregon, USA

11. Hemostasis and Thrombosis Program, Children’s National Hospital, Washington, DC, USA

12. Hemophilia Foundation of Southern California, Pasadena, California, USA

13. MSU Center of Bleeding and Clotting Disorders, Department Pediatrics and Human Development, Michigan State University, East Lansing, Michigan, USA

14. Department of Pediatrics, Oregon Health & Science University, Portland, Oregon, USA

15. Mountain States Regional Hemophilia Network, Portland, Oregon, USA

16. National Hemophilia Foundation, New York, New York, USA

17. Rush Hemophilia and Thrombophilia Treatment Center, Rush University Medical Center, Chicago, Illinois, USA

18. Institute for Policy Advancement, Washington, DC, USA

19. Health Sciences, McMaster University, Hamilton, Ontario, Canada

20. Genentech, Phoenix, Arizona, USA

21. University of California San Francisco Hemophilia Treatment Center, University of California San Francisco, San Francisco, California, USA

22. Patient Author, Lived Experience Expert, Chicago, Illinois, USA

23. Department of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado, USA

24. Hemophilia and Thrombosis Center, Division of Hematology, University of Colorado School of Medicine, Aurora, Colorado, USA

Funder

State of the Science Research Summit and this manuscript were funded by the National Hemophilia Foundation

Publisher

Informa UK Limited

Subject

Hematology

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