Challenges and key lessons from the design and implementation of an international haemophilia registry supported by a pharmaceutical company-Reference-Cited by-同舟云学术

Challenges and key lessons from the design and implementation of an international haemophilia registry supported by a pharmaceutical company

Published:2020-10-23 Issue:6 Volume:26 Page:966-974
ISSN:1351-8216
Container-title:Haemophilia
language:en
Short-container-title:Haemophilia

Author:

Hay Charles R. M.¹^ORCID,Shima Midori²^ORCID,Makris Michael³^ORCID,Jiménez‐Yuste Victor⁴,Oldenburg Johannes⁵^ORCID,Fischer Kathelijn⁶^ORCID,Iorio Alfonso⁷⁸^ORCID,Skinner Mark W.⁷⁹^ORCID,Santagostino Elena¹⁰^ORCID,Mackensen Sylvia¹¹^ORCID,Kessler Craig M.¹²

Affiliation:

1. Manchester University Department of Haematology Manchester UK

2. Nara Medical University Kashihara Japan

3. Department of Infection, Immunity, and Cardiovascular Disease University of Sheffield Sheffield UK

4. Autónoma University Madrid and La Paz University Hospital Madrid Spain

5. Department of Experimental Haematology and Transfusion Medicine University Clinic Bonn Bonn Germany

6. van Creveldkliniek University Medical Center Utrecht Utrecht Netherlands

7. Department of Health Research Methods, Evidence and Impact Department of Medicine McMaster University Hamilton ON Canada

8. Clinical Epidemiology of Congenital Bleeding Disorders McMaster University Hamilton ON Canada

9. Institute for Policy Advancement, Ltd Washington DC USA

10. IRCCS Cà Granda Foundation Maggiore Hospital Policlinico Milan Italy

11. Department of Medical Psychology University Medical Centre Hamburg‐Eppendorf Hamburg Germany

12. Georgetown University Medical Center Washington DC USA

Funder

Bayer Animal Health

Publisher

Wiley

Subject

Genetics (clinical),Hematology,General Medicine

Link

https://onlinelibrary.wiley.com/doi/pdf/10.1111/hae.14144

Reference40 articles.

1. Guidelines for the management of hemophilia

2. Navigating Speed Bumps on the Innovation Highway in Hemophilia Therapeutics

3. Utilizing Patient Registries as Health Technology Assessment (HTA) tool

4. Long-term outcomes from prophylactic or episodic treatment of haemophilia A: A systematic review

5. The growing number of hemophilia registries: Quantity vs. quality

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