European principles of haemophilia care.
B. T. Colvin,Jan Astermark,Krista Fischer,Alessandro Gringeri,Riitta Lassila,W. Schramm,Angela Thomas,Jørgen Ingerslev +7 more
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TLDR
This document sets out the principles of comprehensive haemophilia care in Europe and the need for education and research programmes for all staff members is emphasized.Abstract:
As the management of haemophilia is complex, it is essential that those with the disorder should have ready access to a range of services provided by a multidisciplinary team of specialists. This document sets out the principles of comprehensive haemophilia care in Europe. Within each country there should be a national organization which oversees the provision of specialist Comprehensive Care Centres that provide the entire spectrum of clinical and laboratory services. Depending upon the size and geographical distribution of the population, a network of smaller haemophilia centres may also be necessary. There should be arrangements for the supply of safe clotting factor concentrates which can also be used in home treatment and prophylaxis programmes. A national register of patients is recommended along with collection of treatment statistics. As comprehensive haemophilia care is multidisciplinary by nature, the need for education and research programmes for all staff members is emphasized: Members of the Interdisciplinary Working Group not represented in the list of authors are mentioned in Section 4 of this document.read more
Citations
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Journal ArticleDOI
Guidelines for the management of hemophilia.
A. Srivastava,A. K. Brewer,Evelien P. Mauser-Bunschoten,Nigel S. Key,Steve Kitchen,Adolfo Llinás,C. A. Ludlam,Johnny Mahlangu,K. Mulder,M.-C. Poon,Alison Street +10 more
TL;DR: These evidence‐based guidelines offer practical recommendations on the diagnosis and general management of hemophilia, as well as the management of complications including musculoskeletal issues, inhibitors, and transfusion‐transmitted infections.
Journal ArticleDOI
WFH Guidelines for the Management of Hemophilia, 3rd edition
Alok Srivastava,Elena Santagostino,Alison Dougall,Steve Kitchen,Megan Sutherland,Steven W. Pipe,Manuel Carcao,Johnny Mahlangu,Margaret V. Ragni,Jerzy Windyga,Adolfo Llinás,Nicholas J. Goddard,Richa Mohan,Pradeep M. Poonnoose,Brian M. Feldman,Sandra Zelman Lewis,H. Marijke van den Berg,Glenn F. Pierce +17 more
TL;DR: The WFH Guidelines for the Management of Hemophilia panelists and co-authors thank the panelists for their time and share their views on how to better understand and treat hemophilia.
Journal ArticleDOI
Treatment of hemophilia: a review of current advances and ongoing issues
A. Coppola,Mirko Di Capua,Matteo Nicola Dario Di Minno,Mariagiovanna Di Palo,Emiliana Marrone,Paola Ieranò,Claudia Arturo,Antonella Tufano,Anna Maria Cerbone +8 more
TL;DR: Primary prophylaxis, ie, regular infusion of concentrates started after the first joint bleed and/or before the age of two years, is now recognized as first-line treatment in children with severe hemophilia.
Journal ArticleDOI
Diagnosis and management of haemophilia
TL;DR: This review presents current recommendations for the diagnosis and management of haemophilia, which are generally based on observational studies and case series because few randomised clinical trials have been published in this relatively rare disease.
Journal ArticleDOI
WFH: closing the global gap--achieving optimal care.
TL;DR: To close the gap in care between developed and developing nations a continued focus on the successful strategies deployed heretofore will be required, but in response to the rapid advances in treatment and emerging therapeutic advances on the horizon it will also require fresh approaches and renewed strategic thinking.
References
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Journal ArticleDOI
Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia.
Marilyn J. Manco-Johnson,Marilyn J. Manco-Johnson,Thomas C. Abshire,Amy D. Shapiro,Brenda Riske,Michele R. Hacker,Ray F. Kilcoyne,J. David Ingram,M L Manco-Johnson,Sharon Funk,Linda J. Jacobson,Leonard A. Valentino,W. Keith Hoots,George R. Buchanan,Donna DiMichele,Michael Recht,Deborah L Brown,Cindy A. Leissinger,Shirley Bleak,Alan R. Cohen,Prasad Mathew,Alison Matsunaga,Desiree Medeiros,Diane J. Nugent,Gregory Thomas,Alexis A. Thompson,Kevin McRedmond,J. Michael Soucie,Harlan Austin,Bruce L. Evatt +29 more
TL;DR: Prophylaxis with recombinant factor VIII can prevent joint damage and decrease the frequency of joint and other hemorrhages in young boys with severe hemophilia A.
Journal ArticleDOI
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.
Gilbert C. White,Frits R. Rosendaal,Louis M. Aledort,Jeanne M. Lusher,Chantal Rothschild,Jørgen Ingerslev +5 more
TL;DR: Definitions in Hemophilia - Recommendation of the Scientific Subcommittee on Factor VIII and Factor IX and the Scientific and Standardization Committee of the International Society on Thrombosis and Haemostasis.
Journal ArticleDOI
The epidemiology of inhibitors in haemophilia A: a systematic review.
J Wight,Suzy Paisley +1 more
TL;DR: A systematic review of the best available evidence relating to the epidemiology of inhibitors in haemophilia A found that prevalence and cumulative incidence data should be used to estimate the likely demand for treatments aimed at eliminating inhibitors.
Journal ArticleDOI
Cost of care and quality of life for patients with hemophilia complicated by inhibitors: The COCIS study group
TL;DR: Hemophilia complicated by inhibitors, a prototype of rare disease, requires high amounts of resources for management that provides a satisfactory quality of life, which is similar to that of patients with severe hemophilia without inhibitors.
Journal ArticleDOI
Mortality among males with hemophilia: relations with source of medical care
TL;DR: Although HIV infection and the presence of severe liver disease remain strong predictors of mortality, survival is significantly greater among hemophilics who receive medical care in HTCs, and those persons who had received care in an HTC had a significantly decreased risk of death.
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