Patient‐relevant health outcomes for hemophilia care: Development of an international standard outcomes set

Author:

Balen Erna C.1ORCID,O'Mahony Brian2,Cnossen Marjon H.3,Dolan Gerard4,Blanchette Victor S.5,Fischer Kathelijn6,Gue Deborah7,O'Hara Jamie8,Iorio Alfonso910ORCID,Jackson Shannon7,Konkle Barbara A.1112ORCID,Nugent Diane J.1314,Coffin Donna15,Skinner Mark W.1617,Smit Cees1,Srivastava Alok18,Eenennaam Fred1920,Bom Johanna G.121,Gouw Samantha C.122

Affiliation:

1. Department of Clinical Epidemiology Leiden University Medical Center Leiden The Netherlands

2. Irish Haemophilia Society Trinity College Dublin Ireland

3. Department of Pediatric Hematology Erasmus University Medical Center – Sophia Children's Hospital Rotterdam The Netherlands

4. Centre for Haemostasis and Thrombosis St Thomas' Hospital London UK

5. Division of Hematology/Oncology Department of Pediatrics Hospital for Sick Children University of Toronto Toronto ON Canada

6. Van Creveldkliniek Department of Hematology University Medical Centre Utrecht Utrecht The Netherlands

7. British Columbia Provincial Bleeding Disorders Program – Adult Division St. Paul's Hospital Vancouver BC Canada

8. Faculty of Health and Social Care University of Chester Chester UK

9. Department of Medicine McMaster‐Bayer Endowed Research Chair in Clinical Epidemiology of Congenital Bleeding Disorders McMaster University Hamilton ON Canada

10. Department of Health Research Methods, Evidence and Impact McMaster‐Bayer Endowed Research Chair in Clinical Epidemiology of Congenital Bleeding Disorders McMaster University Hamilton ON Canada

11. Bloodworks Northwest Seattle WA USA

12. Department of Medicine University of Washington Seattle WA USA

13. Children's Hospital University of California Irvine

14. Center for Inherited Blood Disorders Orange CA USA

15. World Federation of Haemophilia Montreal QC Canada

16. National Hemophilia Foundation New York NY USA

17. Institute for Policy Advancement Ltd Washington DC USA

18. Department of Haematology Christian Medical College Vellore India

19. The Decision Group Amsterdam The Netherlands

20. Erasmus School of Accounting & Assurance Erasmus University Rotterdam The Netherlands

21. Center for Clinical Transfusion Research Sanquin/LUMC Leiden The Netherlands

22. Department of Pediatric Hematology Amsterdam University Medical Center Emma Children's Hospital University of Amsterdam Amsterdam The Netherlands

Publisher

Wiley

Subject

Hematology

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