Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding

Author:

Ragni Margaret V.12ORCID,Young Guy3ORCID,Batsuli Glaivy45ORCID,Bisson Emily6,Carpenter Shannon L.7ORCID,Croteau Stacy E.89,Cuker Adam10ORCID,Curtis Randall G.1112ORCID,Denne Michael13,Ewenstein Bruce14,Federizo Amber15,Frick Neil16,Funkhouser Kerry17,George Lindsey A.18,Hoots W. Keith19,Jobe Shawn M.20,Krava Emily21,Langmead Christopher James22ORCID,Lewis Roger J.23ORCID,López José2425,Malec Lynn26,Mann Ziva1627ORCID,Miles Moses E.28,Neely Emma16,Neufeld Ellis J.2930,Pierce Glenn F.31ORCID,Pipe Steven W.232ORCID,Pitler Lisa R.33,Raffini Leslie34ORCID,Schnur Kathaleen M.35ORCID,Shavit Jordan A.323637ORCID

Affiliation:

1. Department of Hematology/Oncology, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA

2. Medical and Scientific Advisory Council, National Hemophilia Foundation, New York, New York, USA

3. Cancer and Blood Disorders Institute, Children’s Hospital Los Angeles, University of Southern California Keck School of Medicine, Los Angeles, California, USA

4. Department of Pediatrics, Emory University, Atlanta, Georgia, USA

5. Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, Atlanta, Georgia, USA

6. Hemostasis & Thrombosis Center, Connecticut Children’s, Hartford, Connecticut, USA

7. Department of Pediatric Hematology/Oncology, Children’s Mercy Hospital, Kansas City, Missouri, USA

8. Boston Hemophilia Treatment Center, Boston Children’s Hospital, Boston, Massachusetts, USA

9. Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA

10. Penn Comprehensive Hemophilia Program, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA

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

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

13. Hematology and Rare Disease, Takeda, Cincinnati, Ohio, USA

14. Takeda Development Center Americas, Inc, Cambridge, Massachusetts, USA

15. Hemostasis and Thrombosis Center of Nevada, Las Vegas, Nevada, USA

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

17. Foundation for Women & Girls with Blood Disorders, Montclair, New Jersey, USA

18. Department of Hematology, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, USA

19. Division of Blood Diseases and Resources, National Heart, Lung and Blood Institute, National Institutes of Health; Health and Human Services, Bethesda, Maryland, USA

20. Department of Pediatrics and Human Development, Michigan State University College of Medicine, East Lansing, Michigan, USA

21. Department of Hematology-Oncology, Children’s Hospital Los Angeles, Los Angeles, California, USA

22. Department of Computational Biology, Carnegie Mellon University, Pittsburgh, Pennsylvania, USA

23. Berry Consultants, LLC, Austin, Texas, USA

24. Bloodworks Northwest, Seattle, Washington, USA

25. Department of Hematology, University of Washington, School of Medicine, Seattle, Washington, USA

26. Blood Research Institute, Versiti, Milwaukee, Wisconsin, USA

27. Ascent Leadership Networks, Newton, Massachusetts, USA

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

29. Department of Hematology, St. Jude Children’s Research Hospital, Memphis, Tennessee, USA

30. Department of Pediatric Medicine, St. Jude Children’s Research Hospital, Memphis, Tennessee, USA

31. World Federation of Hemophilia, Montréal, Québec, Canada

32. Division of Pediatric Hematology and Oncology, University of Michigan, Ann Arbor, Michigan, USA

33. Alliance for Clinical Trials in Oncology Foundation, Chicago, Illinois, USA

34. Hemostasis and Thrombosis Center, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, USA

35. Hemophilia Center of Western Pennsylvania, Pittsburgh, Pennsylvania, USA

36. Human Genetics, University of Michigan, Ann Arbor

37. Hemophilia and Coagulation Disorders Program, University of Michigan, Ann Arbor, Michigan, USA

Funder

National Hemophilia Foundation

Publisher

Informa UK Limited

Subject

Hematology

Reference92 articles.

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