PB1127 - Novel accreditation of European haemophilia treatment and gene therapy centres

Tuesday, July 12, 2022

6:30 PM – 7:30 PM

Location: Exhibition

Presentation Format: In-Person

Presenting Author(s)

Ana Boban, MD, PhD

Professor of Internal Medicine
Department of Internal Medicine, University Hospital Centre Zagreb, Zagreb University School of Medicine
Zagreb, Zagrebacka, Croatia

Co-Author(s)

FB

Fariba Baghaei Borzabadi

Director of the Coagulation Centre
Sahlgrenska University Hospital
Gothenburg, Vastra Gotaland, Sweden
KF

Karin Fijnvandraat

Professor of Pediatric Hematology
Department of Pediatric Hematology, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands
Amsterdam, Noord-Holland, Netherlands
Robert Klamroth, MD, PhD

Priv. Doz. Dr. med.
Vivantes Klinikum im Friedrichshain, Clinic for Internal Medicine Angiology and Haemostaseology
Berlin, Berlin, Germany
Wolfgang Miesbach, MD

Professor and Head of Coagulation Disorders and Comprehensive Care Centre
University Hospital Frankfurt, Frankfurt, Germany
Frankfurt, Hessen, Germany
DS

David Stephensen

physiotherapist, Visiting Reader in Physiotherapy
East Kent Hospitals University NHS Trust, Faculty of Health and Wellbeing, Canterbury Christ Church University
Canterbury, England, United Kingdom
MK

Mary Kavanagh

nurse
Children’s Health Ireland at Crumlin
Dublin, Dublin, Ireland
DN

Declan Noone

President
European Haemophilia Consortium
Brussels, Brussels Hoofdstedelijk Gewest, Belgium
MC

Miguel Crato

steering committe member
European Haempophilia Consortium
Montijo, Setubal, Portugal
Flora Peyvandi, MD, PhD

Professor of Internal Medicine; Director of the Angelo Bianchi Bonomi Hemophilia & Thrombosis Center
Angelo Bianchi Bonomi Hemophilia and Thrombosis Center, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy; Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, Italy
Milan, Lombardia, Italy

Background: The international accreditation of haemophilia centres in Europe is run by the EAHAD and EHC since 2013. The centres are designated as European Haemophilia Comprehensive Care Centres (EHCCC) or European Haemophilia Treating Centres (EHTC), based on the specific requirements which evaluate centres’ ability to provide care for patients with haemophilia and allied disorders.

Aims: The development of a novel accreditation for gene therapy and other novel treatment approaches for management of haemophilia by EAHAD and EHC.

Methods: To facilitate the realization of these changes, EAHAD, in collaboration with EHC, has taken the steps to define necessary measures to safeguard quality and improvement of bleeding disorders care throughout Europe, to build a novel model for implementation of gene therapy and to provide a new Auditing and Certification protocol.

Results: The haemophilia centres are organized to offer multi-disciplinary integrated comprehensive care and equal access to all treatment possibilities, including gene therapy, to all patients. A tight network of centres structured along a hub-and-spoke-model, will address all aspects of gene therapy, from dosing, surveillance of the immediate post-infusion period, to the long-term follow-up. We are presently designing the content and logistics of the multidisciplinary Auditing and Certification procedures and expect to start with our auditing process in 2023.

Conclusion(s): The new EAHAD audit and accreditation process has a challenging task to help haemophilia centres to improve the delivery of care by multi-disciplinary integrated comprehensive care model and equal access to all novel therapies, including gene therapy as well as multidisciplinary services to all patients.