Literature DB >> 24273489

Global Emerging HEmophilia Panel (GEHEP): A Multinational Collaboration for Advancing Hemophilia Research and Treatment.

Paula James1, Raj Kasthuri, Rebecca Kruse-Jarres, Amit Soni, Roshni Kulkarni, Christoph Bidlingmaier, Meera Chitlur, Patrick Fogarty, Keith Gomez, Pål Andrè Holm, Johnny Mahlangu, Maria Elisa Mancuso, Maria Eva Mingot-Castellano, Gerry Dolan.   

Abstract

GEHEP, established in 2009, is an independent, multi-institutional, international consortium of early career hematology specialists in the field of hemophilia and other inherited bleeding disorders. The main objective of the group, whose members practice at institutions in North America, Europe, and South Africa, is to advance hemophilia care by providing a forum for mentored collaborative research, developing programs for improving clinical care, and promoting academic career development of junior faculty. GEHEP members collect and document anonymized data on intra- and interinstitutional differences in patient populations, diagnosis, and treatment in the field of hemophilia and other bleeding disorders. To facilitate sharing of aggregated data among GEHEP members, a global protocol was developed and approved by most members' local institutional review board. Current GEHEP research initiatives are varied, encompassing work in pediatric and adult patients. GEHEP members have presented research at international meetings on the initiation of prophylaxis in children, use of immune tolerance induction in adults, and prevalence of acute coronary syndromes in older patients with hemophilia. The main goal of the continuing work of GEHEP is to advance the care of patients with hemophilia worldwide.

Entities:  

Keywords:  Blood coagulation disorder; Clinical research; GEHEP; Hemophilia; International cooperation

Year:  2013        PMID: 24273489      PMCID: PMC3822276          DOI: 10.1159/000354843

Source DB:  PubMed          Journal:  Transfus Med Hemother        ISSN: 1660-3796            Impact factor:   3.747


  5 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.  The natural evolution of haemophilia care: developing and sustaining comprehensive care globally.

Authors:  B L Evatt
Journal:  Haemophilia       Date:  2006-07       Impact factor: 4.287

Review 3.  Genetic diagnosis of haemophilia and other inherited bleeding disorders.

Authors:  F Peyvandi; G Jayandharan; M Chandy; A Srivastava; S M Nakaya; M J Johnson; A R Thompson; A Goodeve; I Garagiola; S Lavoretano; M Menegatti; R Palla; M Spreafico; L Tagliabue; R Asselta; S Duga; P M Mannucci
Journal:  Haemophilia       Date:  2006-07       Impact factor: 4.287

Review 4.  Expanding hemophilia care in developing countries.

Authors:  Brian O'Mahony; Claudia Black
Journal:  Semin Thromb Hemost       Date:  2005-11       Impact factor: 4.180

5.  Comprehensive care in hemophilia.

Authors:  Arlette Ruiz-Sáez
Journal:  Hematology       Date:  2012-04       Impact factor: 2.269

  5 in total
  2 in total

1.  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

2.  Real-World Rates of Bleeding, Factor VIII Use, and Quality of Life in Individuals with Severe Haemophilia A Receiving Prophylaxis in a Prospective, Noninterventional Study.

Authors:  Gili Kenet; Yeu-Chin Chen; Gillian Lowe; Charles Percy; Huyen Tran; Annette von Drygalski; Marc Trossaërt; Mark Reding; Johannes Oldenburg; Maria Eva Mingot-Castellano; Young-Shil Park; Flora Peyvandi; Margareth C Ozelo; Johnny Mahlangu; Jennifer Quinn; Mei Huang; Divya B Reddy; Benjamin Kim
Journal:  J Clin Med       Date:  2021-12-18       Impact factor: 4.241

  2 in total

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