Literature DB >> 24922293

The European standards of Haemophilia Centres.

Paul Giangrande1, Gabriele Calizzani2, Ivana Menichini3, Fabio Candura2, Pier Mannuccio Mannucci4, Michael Makris5.   

Abstract

INTRODUCTION: The European haemophilia community of professionals and patients has agreed on the principles of haemophilia care to address comprehensive optimal delivery of care which is nowadays scattered throughout Europe. Many of the health facilities call themselves Haemophilia Centres despite their variation in size, expertise and services provided. Only a small number of countries have Haemophilia Centre accreditation systems in place.
METHODS: In the framework of the European Haemophilia Network project, following an inclusive process of stakeholder involvement, the European Guidelines for the certification of haemophilia centres have been developed in order to set quality standards for European Haemophilia Centres and criteria for their certification.
RESULTS: The Guidelines define the standards and criteria for the designation of two levels of care delivery: European Haemophilia Treatment Centres, providing local routine care, and European Haemophilia Comprehensive Care Centres, providing specialised and multi-disciplinary care and functioning as tertiary referral centres. Additionally, they define standards about general requirements, patient care, provision of an advisory service and establishment of network of clinical and specialised services.
CONCLUSIONS: The implementation of the European Guidelines for the certification of Haemophilia Centres will contribute to the reduction of health inequalities through the standardisation of quality of care in European Union Member States and could represent a model to be taken into consideration for other rare disease groups.

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Year:  2014        PMID: 24922293      PMCID: PMC4044800          DOI: 10.2450/2014.0056-14s

Source DB:  PubMed          Journal:  Blood Transfus        ISSN: 1723-2007            Impact factor:   3.443


  8 in total

1.  Definitions in hemophilia. Recommendation of the scientific subcommittee on factor VIII and factor IX of the scientific and standardization committee of the International Society on Thrombosis and Haemostasis.

Authors:  G C White; F Rosendaal; L M Aledort; J M Lusher; C Rothschild; J Ingerslev
Journal:  Thromb Haemost       Date:  2001-03       Impact factor: 5.249

Review 2.  Treatment of von Willebrand's Disease.

Authors:  Pier Mannuccio Mannucci
Journal:  N Engl J Med       Date:  2004-08-12       Impact factor: 91.245

Review 3.  The European Haemophilia Network (EUHANET).

Authors:  Michael Makris; Gabriele Calizzani; Kathelijn Fischer; Alexander Gatt; Estelle Gilman; Robert Hollingsworth; Thierry Lambert; Riitta Lassila; Pier Mannuccio Mannucci; Flora Peyvandi; Jerzy Windyga
Journal:  Blood Transfus       Date:  2014-04       Impact factor: 3.443

4.  A study of variations in the reported haemophilia B prevalence around the world.

Authors:  J S Stonebraker; P H B Bolton-Maggs; J Michael Soucie; I Walker; M Brooker
Journal:  Haemophilia       Date:  2011-06-07       Impact factor: 4.287

5.  The methodology for defining the European standards for the certification of Haemophilia Centres in Europe.

Authors:  Fabio Candura; Ivana Menichini; Gabriele Calizzani; Paul Giangrande; Pier Mannuccio Mannucci; Michael Makris
Journal:  Blood Transfus       Date:  2014-04       Impact factor: 3.443

6.  A study of variations in the reported haemophilia A prevalence around the world.

Authors:  J S Stonebraker; P H B Bolton-Maggs; J Michael Soucie; I Walker; M Brooker
Journal:  Haemophilia       Date:  2009-10-21       Impact factor: 4.287

7.  Haemophilia care in Europe - a survey of 35 countries.

Authors:  B O'Mahony; D Noone; P L F Giangrande; L Prihodova
Journal:  Haemophilia       Date:  2013-04-04       Impact factor: 4.287

8.  European principles of haemophilia care.

Authors:  B T Colvin; J Astermark; K Fischer; A Gringeri; R Lassila; W Schramm; A Thomas; J Ingerslev
Journal:  Haemophilia       Date:  2008-01-30       Impact factor: 4.287

  8 in total
  9 in total

1.  Haemophilia Centre Certification Systems: optional or optimal choice for healthcare systems?

Authors:  Gabriele Calizzani; Michael Makris; Pier Mannuccio Mannucci; Domenica Taruscio; Giuliano Grazzini; Fabrizio Oleari
Journal:  Blood Transfus       Date:  2014-04       Impact factor: 3.443

2.  The Italian institutional accreditation model for Haemophilia Centres.

Authors:  Gabriele Calizzani; Fabio Candura; Ivana Menichini; Romano Arcieri; Giancarlo Castaman; Alessandro Lamanna; Maria R Tamburrini; Antonio Fortino; Monica Lanzoni; Samantha Profili; Simonetta Pupella; Giancarlo M Liumbruno; Giuliano Grazzini
Journal:  Blood Transfus       Date:  2014-04       Impact factor: 3.443

3.  The methodology for defining the European standards for the certification of Haemophilia Centres in Europe.

Authors:  Fabio Candura; Ivana Menichini; Gabriele Calizzani; Paul Giangrande; Pier Mannuccio Mannucci; Michael Makris
Journal:  Blood Transfus       Date:  2014-04       Impact factor: 3.443

4.  Coordinating physiotherapy care for persons with haemophilia.

Authors:  Merel A Timmer; Johan Blokzijl; Roger E G Schutgens; Cindy Veenhof; Martijn F Pisters
Journal:  Haemophilia       Date:  2021-09-07       Impact factor: 4.263

Review 5.  Aspects of prophylactic treatment of hemophilia.

Authors:  Rolf Ljung
Journal:  Thromb J       Date:  2016-10-04

6.  Comparing regional models of congenital bleeding disorders: preliminary steps in the Italian context.

Authors:  Sabina Nuti; Chiara Seghieri; Francesco Niccolai; Federica Vasta; Giuliano Grazzini
Journal:  BMC Res Notes       Date:  2017-06-26

Review 7.  European principles of inhibitor management in patients with haemophilia.

Authors:  P L F Giangrande; C Hermans; B O'Mahony; P de Kleijn; M Bedford; A Batorova; J Blatný; K Jansone
Journal:  Orphanet J Rare Dis       Date:  2018-04-27       Impact factor: 4.123

8.  Establishing an online physical exercise program for people with hemophilia.

Authors:  Barbara Wagner; Axel Seuser; Steffen Krüger; Marie Luca Herzig; Thomas Hilberg; Cihan Ay; Timothy Hasenöhrl; Richard Crevenna
Journal:  Wien Klin Wochenschr       Date:  2019-09-18       Impact factor: 1.704

9.  Haemophilia in France: Modelisation of the Clinical Pathway for Patients.

Authors:  Karen Beny; Benjamin du Sartz de Vigneulles; Florence Carrouel; Denis Bourgeois; Valérie Gay; Claude Negrier; Claude Dussart
Journal:  Int J Environ Res Public Health       Date:  2022-01-06       Impact factor: 3.390

  9 in total

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