Literature DB >> 24762287

Enhancing haemophilia care through registries.

G Dolan1, M Makris, P H B Bolton-Maggs, J A Rowell.   

Abstract

Clinical registries or databases have an increasing role in the management of inherited bleeding disorders. Initially, research-based registries provided valuable data and now national databases are increasingly being developed with multiple stakeholders, including persons with haemophilia (PWH) and payers, to enable improvements and efficiencies in care. Registries are extending to international collaborations to collect adverse event data and comparisons of national approaches to the management of haemophilia to improve the availability of product to PWH.
© 2014 John Wiley & Sons Ltd.

Entities:  

Keywords:  adverse event; haemophilia; registry; treatment

Mesh:

Year:  2014        PMID: 24762287     DOI: 10.1111/hae.12406

Source DB:  PubMed          Journal:  Haemophilia        ISSN: 1351-8216            Impact factor:   4.287


  4 in total

1.  New data from the Italian National Register of Congenital Coagulopathies, 2016 Annual Survey.

Authors:  Francesca Abbonizio; Hamisa J Hassan; Roberta Riccioni; Elena Santagostino; Romano Arcieri; Adele Giampaolo
Journal:  Blood Transfus       Date:  2019-02-13       Impact factor: 3.443

2.  The Glanzmann's Thrombasthenia in Tunisia: A Cohort Study.

Authors:  Hejer Elmahmoudi; Meriem Achour; Nejla Belhedi; Hend Ben Neji; Kaouther Zahra; Balkis Meddeb; Emna Gouider
Journal:  J Hematol       Date:  2017-07-20

3.  Engaging rural communities in cancer prevention and control research: Development and preliminary insights from a community-based research registry.

Authors:  Maria D Thomson; April R Williams; Arnethea L Sutton; Katherine Y Tossas; Charlotte Garrett; Vanessa B Sheppard
Journal:  Cancer Med       Date:  2021-10-14       Impact factor: 4.452

4.  Evaluation of a web-based registry of inherited bleeding disorders: a descriptive study of the Brazilian experience with HEMOVIDAweb Coagulopatias.

Authors:  Suely Meireles Rezende; Silvia Helena Lacerda Rodrigues; Kelly Neves Pinheiro Brito; Diego Lima Quintino da Silva; Marcos Lázaro Santo; Bárbara de Jesus Simões; Guilherme Genovez; Helder Teixeira Melo; João Paulo Baccara Araújo; Danila Augusta Accioly Varella Barca
Journal:  Orphanet J Rare Dis       Date:  2017-02-10       Impact factor: 4.123

  4 in total

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