Quality of life in a large multinational haemophilia B cohort (The B‐Natural study) – Unmet needs remain

Author:

Berntorp Erik1ORCID,LeBeau Petra2,Ragni Margaret V.3ORCID,Borhany Munira4ORCID,Abajas Yasmina L.5,Tarantino Michael D.6,Holstein Katharina7,Croteau Stacy E.8ORCID,Liesner Raina9ORCID,Tarango Cristina10ORCID,Carvalho Manuela11,McGuinn Catherine12ORCID,Funding Eva13,Kempton Christine L.14ORCID,Bidlingmaier Christoph15,Cohen Alice16,Oldenburg Johannes17ORCID,Kearney Susan18,Knoll Christine19,Kuriakose Philip20,Acharya Suchitra21,Reiss Ulrike M.22ORCID,Kulkarni Roshni23ORCID,Witkop Michelle24,Lethagen Stefan25,Krouse Rebecca2,Shapiro Amy D.26ORCID,Astermark Jan27ORCID

Affiliation:

1. Clinical Coagulation Research Department of Translational Medicine Lund University Malmö Sweden

2. Rho, Inc. Durham North Carolina USA

3. University of Pittsburgh and Hemophilia Center of Western Pennsylvania Pittsburgh Pennsylvania USA

4. National Institute of Blood Disease and Bone Marrow Transplantation Karachi Pakistan

5. Hemophilia and Thrombosis Center University of North Carolina Chapel Hill North Carolina USA

6. Bleeding and Clotting Disorders Institute Peoria Illinois USA

7. University Medical Center Hamburg‐Eppendorf Medical Department, Haemophilia Center Hamburg Germany

8. Boston Children's Hospital Boston Hemophilia Center Boston Massachusetts USA

9. Great Ormond Street Hospital for Children NHS Trust supported by NIHR, GOSH, BRC London UK

10. Cancer and Blood Diseases Institute Cincinnati Children's Hospital Medical Center Department of Pediatrics University of Cincinnati College of Medicine Cincinnati Ohio USA

11. Congenital Coagulopathies Reference Centre Centro Hospitalar Universitário São João Porto Portugal

12. Weill Cornell Medical College New York New York USA

13. Department of Hematology University Hospital Rigshospitalet Institute of Clinical Medicine University of Copenhagen Copenhagen Denmark

14. Emory University School of Medicine Emory University Atlanta Georgia USA

15. Dr. v. Hauner's Childrens University Hospital Hemophilia Center LMU Hospital Munich Germany

16. Newark Beth Israel Medical Center Newark New Jersey USA

17. University Clinic Bonn Bonn Germany

18. Children's Minnesota Center for Bleeding and Clotting Disorders Minneapolis Minnesota USA

19. Phoenix Children's Hospital Phoenix Arizona USA

20. Henry Ford Hospital Detroit Michigan USA

21. Northwell Hemostasis and Thrombosis Center New Hyde Park New York New York USA

22. St. Jude Children's Research Hospital Memphis Tennessee USA

23. Michigan State University East Lansing Michigan USA

24. Munson Medical Center Northern Regional Bleeding Disorders Center Traverse City Michigan USA

25. Sobi Stockholm Sweden

26. Indiana Hemophilia and Thrombosis Center Indianapolis Indiana USA

27. Department of Translational Medicine Lund University and Department of Hematology Oncology and Radiation Physics Skåne University Hospital Malmö Sweden

Funder

Sanofi

Biogen

Swedish Orphan Biovitrum

Publisher

Wiley

Subject

Genetics (clinical),Hematology,General Medicine

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