The second Team Haemophilia Education Meeting, 2016, Frankfurt, Germany

Erik Berntorp; Yesim Dargaud; Daniel Hart; Sébastien Lobet; Maria Elisa Mancuso; Roseline d'Oiron; David Perry; Debra Pollard; Marijke van den Berg; Jan Blatný; Hervé Chambost; Andrea S Doria; Pål André Holme; Radoslaw Kaczmarek; Lorenzo Mantovani; Paul McLaughlin; Lochana Nanayakkara; Pia Petrini; Thomas Sannié; Edward Laane; Raquel Maia; Athina Dettoraki; Anna Farrell; Susan Halimeh; Sayma Raza; Stephanie Taylor

doi:10.1111/ejh.12828

The second Team Haemophilia Education Meeting, 2016, Frankfurt, Germany

Eur J Haematol. 2017 Jan:98 Suppl 85:1-15. doi: 10.1111/ejh.12828.

Authors

Erik Berntorp¹, Yesim Dargaud², Daniel Hart³, Sébastien Lobet⁴, Maria Elisa Mancuso⁵, Roseline d'Oiron⁶, David Perry⁷, Debra Pollard⁸, Marijke van den Berg⁹, Jan Blatný¹⁰, Hervé Chambost¹¹, Andrea S Doria^{12

13}, Pål André Holme¹⁴, Radoslaw Kaczmarek¹⁵, Lorenzo Mantovani¹⁶, Paul McLaughlin¹⁷, Lochana Nanayakkara¹⁸, Pia Petrini¹⁹, Thomas Sannié²⁰, Edward Laane²¹, Raquel Maia²², Athina Dettoraki²³, Anna Farrell²⁴, Susan Halimeh²⁵, Sayma Raza²⁶, Stephanie Taylor²⁷

Affiliations

¹ Skåne University Hospital, Lund University, Malmö, Sweden.
² Clinical Haemostasis Unit, Lyon Hospital, University of Lyon, Lyon, France.
³ Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK.
⁴ Service d'hématologie, Cliniques Universitaires Saint-Luc, Brussels, Belgium.
⁵ Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre, Milan, Italy.
⁶ Centre for Haemophilia and Rare Congenital Bleeding Disorders, University Hospitals Paris-Sud, AP-HP Bicêtre Hospital, Le Kremlin-Bicêtre, France.
⁷ Addenbrooke's Hospital, University of Cambridge, Cambridge, UK.
⁸ Katharine Dormandy Haemophilia & Thrombosis Centre, Royal Free Hospital, London, UK.
⁹ Department of Health and Epidemiology, University of Utrecht, Utrecht, The Netherlands.
¹⁰ Department of Paediatric Haematology, Children's University Hospital and Masaryk University, Brno, Czech Republic.
¹¹ Department of Paediatrics, La Timone Children Hospital, APHM and Aix-Marseille University, Marseille, France.
¹² Department of Diagnostic Imaging, The Hospital for Sick Children, Toronto, ON, Canada.
¹³ Department of Medical Imaging, University of Toronto, Toronto, ON, Canada.
¹⁴ Department of Haematology and Institute of Clinical Medicine, Oslo University and Oslo University Hospital, Rikshospitalet, Norway.
¹⁵ Hirszfeld Institute of Immunology and Experimental Therapy, Wroclaw, Poland.
¹⁶ Public Health, CESP-Center of Public Health Research, University of Milano-Bicocca, Milan, Italy.
¹⁷ Department of Physiotherapy, Katharine Dormandy Haemophilia Centre, Royal Free Hospital, London, UK.
¹⁸ Department of Restorative Dentistry, Barts Health NHS Trust, London, UK.
¹⁹ Department of Paediatrics, Karolinska University Hospital, Stockholm, Sweden.
²⁰ Association Française des Hémophilies (AFH), Paris, France.
²¹ North Estonia Medical Centre, Tallinn, Estonia.
²² Paediatric Haematology Unit, Dona Estefânia Hospital, Lisbon, Portugal.
²³ Haemophilia Centre and Haemostasis Unit, 'Aghia Sophia' Children's Hospital, Athens, Greece.
²⁴ Bristol Royal Hospital for Children, Bristol, UK.
²⁵ Gerinnungszentrum Rhein-Ruhr (GZRR), Duisburg, Germany.
²⁶ Oxford University Hospitals NHS Foundation Trust, Oxford, UK.
²⁷ Oxford Haemophilia and Thrombosis Centre, Oxford University Hospitals Foundation Trust, Oxford, UK.

PMID: 28101938
DOI: 10.1111/ejh.12828

Abstract

The first Team Haemophilia Education (THE) Meeting was held on 7-8 May 2015 in Amsterdam, The Netherlands. It aimed to promote the optimal care of patients with haemophilia through education of the multidisciplinary treatment team. This was achieved by reviewing the latest developments in haemophilia management, considering how these can be implemented in the clinic to improve patient care and providing a platform for networking and debate for all haemophilia treatment team members. The second THE Meeting was held on 19-20 May in Frankfurt, Germany, and participants included doctors, nurses, physiotherapists, patient representatives and data management staff from 20 different countries. Topics covered the role of the multidisciplinary team in delivering the best haemophilia care, challenges in the management of haemophilia across Europe, available clotting factor treatments, future treatments and the use of genetics in advising carriers of haemophilia. This report is a summary of the key developments in haemophilia care presented by various investigators and healthcare professionals at THE Meeting 2016.

Keywords: clotting factor concentrates; genetics; haemophilia; laboratory assays; multidisciplinary; real-life data.

Publication types

Congress

MeSH terms

Delivery of Health Care
Disease Management
Europe
Germany
Health Facilities
Hemophilia A / therapy*
Hemophilia B / therapy*
Humans
Patient Care Team