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Accreditation model of European Haemophilia Centres in the era of novel treatments and gene therapy.
Boban A, Baghaei F, Karin F, Klamroth R, Miesbach W, Stephensen D, Kavanagh M, Noone D, Crato M, Peyvandi F; EAHAD Accreditation and Audit of Haemophilia Centres Working Group. Boban A, et al. Haemophilia. 2023 Nov;29(6):1442-1449. doi: 10.1111/hae.14887. Epub 2023 Oct 11. Haemophilia. 2023. PMID: 37819168
INTRODUCTION: The international certification of haemophilia centres in Europe is run by the European Association of Haemophilia and Allied Disorders (EAHAD) and European Haemophilia Consortium (EHC) sin …
INTRODUCTION: The international certification of haemophilia centres in Europe is run by the European Association of …
European principles of care for women and girls with inherited bleeding disorders.
van Galen K, Lavin M, Skouw-Rasmussen N, Fischer K, Noone D, Pollard D, Mauser-Bunschoten E, Khair K, Gomez K, van Loon E, Bagot CN, Elfvinge P, d'Oiron R, Abdul-Kadir R; European Haemophilia Consortium (EHC) and the European Association for Haemophilia and Allied Disorders (EAHAD). van Galen K, et al. Haemophilia. 2021 Sep;27(5):837-847. doi: 10.1111/hae.14379. Epub 2021 Aug 3. Haemophilia. 2021. PMID: 34343384
We aimed to develop practical principles of care (PoC) to promote standardization of care for WGBD within European Haemophilia Treatment and Comprehensive Care Centres (HTC/CCCs). METHODS: The co-creation process, supported by the European Association …
We aimed to develop practical principles of care (PoC) to promote standardization of care for WGBD within European Haemophilia …
European principles of care for physiotherapy provision for persons with inherited bleeding disorders: Perspectives of physiotherapists and patients.
de Kleijn P, Duport G, Jansone K, Marinić M, McLaughlin P, Noone D, Ramishvili L, Tollwé A, Stephensen D; European Haemophilia Consortium and EAHAD Physiotherapy Committee. de Kleijn P, et al. Haemophilia. 2022 Jul;28(4):649-655. doi: 10.1111/hae.14566. Epub 2022 May 4. Haemophilia. 2022. PMID: 35506491 Review.
AIM: Access to high quality individualised physiotherapy should be ensured for all PWBD, including those with mild and moderate severities, male and female, people with von Willebrand Disease (vWD) and other rare bleeding disorders. ...METHODS/ RESULTS: Follo …
AIM: Access to high quality individualised physiotherapy should be ensured for all PWBD, including those with mild and moderate severities, …
European principles of inhibitor management in patients with haemophilia.
Giangrande PLF, Hermans C, O'Mahony B, de Kleijn P, Bedford M, Batorova A, Blatný J, Jansone K; European Haemophilia Consortium (EHC) and the European Association for Haemophilia and Allied Disorders (EAHAD). Giangrande PLF, et al. Orphanet J Rare Dis. 2018 Apr 27;13(1):66. doi: 10.1186/s13023-018-0800-z. Orphanet J Rare Dis. 2018. PMID: 29703220 Free PMC article. Review.
METHODS: Following a series of multidisciplinary meetings and a review of the literature, the European haemophilia community of health professionals and patients jointly defined practical optimum standards for ensuring and harmonizing treatment and care for patients …
METHODS: Following a series of multidisciplinary meetings and a review of the literature, the European haemophilia community o …
Delivery of AAV-based gene therapy through haemophilia centres-A need for re-evaluation of infrastructure and comprehensive care: A Joint publication of EAHAD and EHC.
Miesbach W, Chowdary P, Coppens M, Hart DP, Jimenez-Yuste V, Klamroth R, Makris M, Noone D, Peyvandi F. Miesbach W, et al. Haemophilia. 2021 Nov;27(6):967-973. doi: 10.1111/hae.14420. Epub 2021 Sep 22. Haemophilia. 2021. PMID: 34553460 Free article.
INTRODUCTION: Adeno-associated virus (AAV)-based gene therapy for haemophilia presents a challenge to the existing structure of haemophilia centres and requires a rethink of current collaboration and information exchange with the aim of ensuring a system that …
INTRODUCTION: Adeno-associated virus (AAV)-based gene therapy for haemophilia presents a challenge to the existing structure o …
Common themes and challenges in hemophilia care: a multinational perspective.
Stoffman J, Andersson NG, Branchford B, Batt K, D'Oiron R, Escuriola Ettingshausen C, Hart DP, Jiménez Yuste V, Kavakli K, Mancuso ME, Nogami K, Ramírez C, Wu R. Stoffman J, et al. Hematology. 2019 Dec;24(1):39-48. doi: 10.1080/10245332.2018.1505225. Epub 2018 Aug 3. Hematology. 2019. PMID: 30073913
These themes were then incorporated into a road map for collaborative care in hemophilia that reflected the contribution of best practice. DISCUSSION: Differing healthcare reimbursement systems, budgetary constraints, and geographical and cultural factors make it difficult …
These themes were then incorporated into a road map for collaborative care in hemophilia that reflected the contribution of best prac …
Vaccination against COVID-19: Rationale, modalities and precautions for patients with haemophilia and other inherited bleeding disorders.
Kaczmarek R, El Ekiaby M, Hart DP, Hermans C, Makris M, Noone D, O'Mahony B, Page D, Peyvandi F, Pipe SW, Sannié T, Schlenkrich U, Skinner MW, Srivastava A, Bok A, Pierce GF; World Federation of Hemophilia (WFH), European Association for Haemophilia, Allied Disorders (EAHAD), European Haemophilia Consortium (EHC), U.S. National Hemophilia Foundation (NHF). Kaczmarek R, et al. Haemophilia. 2021 Jul;27(4):515-518. doi: 10.1111/hae.14271. Epub 2021 Mar 2. Haemophilia. 2021. PMID: 33651911 Free PMC article. No abstract available.
European principles of inhibitor management in patients with haemophilia: implications of new treatment options.
Hermans C, Giangrande PLF, O'Mahony B, de Kleijn P, Bedford M, Batorova A, Blatný J, Jansone K; European Haemophilia Consortium (EHC) and the European Association for Haemophilia and Allied Disorders (EAHAD). Hermans C, et al. Orphanet J Rare Dis. 2020 Aug 24;15(1):219. doi: 10.1186/s13023-020-01511-8. Orphanet J Rare Dis. 2020. PMID: 32831110 Free PMC article. No abstract available.