20 Articles
System Change
Accès libre | 26 févr. 2024
System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency
et Naja Skouw-Rasmussen
European Haemophilia ConsortiumBrussels, Belgium
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Accès libre | 05 août 2024
System change in practice: A report from the EHC Think Tank workstreams on Access Equity and Future Care Pathways
, , , et Nurse Focus
Accès libre | 26 févr. 2024
Living, Caring, Learning - Thinking outside the box to solve care challenges in a rare blood disorder
Accès libre | 26 févr. 2024
Living, Caring, Learning - Building family relationships in haemophilia care
Accès libre | 26 févr. 2024
Living, Caring, Learning - Changing mindsets and enabling goals for people with haemophilia
Anne-Louise Cruickshank
Haemophilia Nurse Co-ordinator at the South African Haemophilia Foundation (SAHF), Groote Schuur Hospital, Cape Town, South Africa, a Member of the SAHF Haemophilia Nurses Committee, and Secretary of SAHF Medical and Scientific Advisory CouncilCape Town, South Africa
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Accès libre | 07 mai 2024
Living, Caring, Learning – Listening to patients with bleeding disorders and not being afraid to advocate
Michelle Witkop
MICHELLE WITKOP recently retired as Vice President, Research Strategy, National Hemophilia Foundation, and was previously Lead Clinician-Nurse Practitioner at the Northern Regional Michigan Bleeding Disorders CenterNew York, USA
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Accès libre | 07 mai 2024
Living, Caring, Learning – Collaborating across borders to support a haemophilia patient with a rare complication
Accès libre | 07 mai 2024
Living, Caring, Learning – Setting boundaries for the wellbeing of everyone in bleeding disorders care
Cathy Harrison
CATHY HARRISON is an Advanced Nurse Practitioner in Haemophilia & Associated Haemostasis Disorders at Sheffield Haemophilia & Thrombosis Centre, UK. She was Vice Chair of the World Federation of Hemophilia (WFH) Nurses Committee and became Chair following the WFH 2024 World CongressSheffield, UK
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Accès libre | 07 mai 2024
Living, Caring, Learning – The power of qualitative research in bleeding disorders care: One voice, from soloist to choir
Simon Fletcher
SIMON FLETCHER is Principal Researcher at Haemnet and was a clinical research nurse at the Oxford Haemophilia and Thrombosis Centre, Oxford University Hospitals NHS Foundation Trust. He is undertaking a PhD exploring the impact and lived experience of gene therapy for haemophiliaOxford, England
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Accès libre | 07 mai 2024
Editorial – Living, Caring, Learning: The nurse-patient relationship in bleeding disorders care
Clinical Research
Accès libre | 08 avr. 2024
Exploring patient and clinician perspectives on the benefits and risks of emerging therapies for the treatment of haemophilia: a qualitative study
John Spoors
- London School of Hygiene and Tropical MedicineLondon, UK
- NHS EnglandLondon, UK
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, Katherine Payne
Division of Population Health, Health Services and Primary Care, University of ManchesterManchester, UK
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, , , Sadie Bell
London School of Hygiene and Tropical MedicineLondon, UK
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et John Cairns
London School of Hygiene and Tropical MedicineLondon, UK
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Accès libre | 22 avr. 2024
Real-world clinical and psychosocial outcomes among people with mild or moderate haemophilia A treated on-demand in the Italian CHESS II cohort: a real-world data analysis
Giancarlo Castaman
SODc Malattie Emorragiche e della Coagulazione, Azienda Ospedaliera Universitaria CareggiFirenze, Italy
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, Maria Elisa Mancuso
- Center for Thrombosis and Hemorrhagic Diseases, IRCCS Humanitas Research HospitalRozzano, Italy
- Humanitas University, Pieve EmanueleMilan, Italy
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, Matteo Nicola Dario Di Minno
Dipartimento di Medicina Clinica e Chirurgia, Universita di Napoli Federico IINapoli, Italy
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, , , , , Tom Burke
HCD Economics, Knutsford, UK; Faculty of Health and Social Care, University of ChesterChester, UK
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et Accès libre | 20 sept. 2024
Development of a patient-reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia B
Melanie Bladen
Great Ormond Street Hospital for Children NHS Foundation TrustLondon, UK
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, Janet McDonagh
Manchester Academic Health Science Centre, University of Manchester, National Institute for Health Research Biomedical Research Centre, Manchester University Hospital NHS TrustManchester,
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, Paul McLaughlin
Katharine Dornandy Haemophilia Centre and Thrombosis Unit, Royal Free London NHS Foundation TrustLondon, UK
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, , , , Brittany Klooster
Adelphi Values Patient-Centered OutcomesBoston, US
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, , Diane M. Turner-Bowker
Adelphi Values Patient-Centered OutcomesBoston, US
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, , , , , et Accès libre | 25 nov. 2024
Diagnostic performance of point-of-care ultrasonography (POC-US) in haemophilia joint health: a comparative study with MRI
Yash Duseja
Department of Medicine, Assam Medical CollegeDibrugarh, India
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, , Anupam Dutta
Department of Medicine, Assam Medical CollegeDibrugarh, India
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, , Bhabani Dhal
Department of Medicine, Assam Medical CollegeDibrugarh, India
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et Luish Borboruah
Department of Medicine, Assam Medical CollegeDibrugarh, India
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Accès libre | 11 févr. 2025
Community Voices in Research (CVR): A lived experience expert-centred approach to advance the future of inheritable bleeding disorders
Maria E Santaella
National Bleeding Disorders Foundation (NBDF) – Research DepartmentNew York, United States
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, Cynthia D Nichols
Munson Medical CenterTraverse City, United States
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et Michelle Witkop
Bleeding Disorders Consultant, Contributed to CVR development while employed at NBDFMichigan, United States
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Clinical Practice
Accès libre | 08 avr. 2024
CATCH 2023 Meeting Summary: Collaborate & Address Treatment Challenges in Haemophilia
Gary Benson
Northern Ireland Haemophilia Comprehensive Care Centre and Thrombosis UnitBelfast, Northern Ireland
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, Nicola Curry
Oxford University Hospitals NHS Foundation TrustOxford, UK
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, , , , , Gillian Lowe
University Hospitals Birmingham NHS Foundation TrustBirmingham, UK
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, , , Paul McLaughlin
Royal Free London NHS Foundation TrustLondon, UK
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, Charles Percy
University Hospitals Birmingham NHS Foundation TrustBirmingham, UK
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, et Sarah Whitaker
Basingstoke and North Hampshire HospitalBasingstoke, UK
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Accès libre | 18 avr. 2024
A multi-stakeholder collaborative approach to awareness, education and support needed in the haemophilia gene therapy patient journey – a report on insights from a European patient advisory board
, , , , , , , et Accès libre | 31 déc. 2024
A single centre experience with clinical use of Neria™ Guard as mode of pain and distress management in the administration of emicizumab in children
Maj Friberg Birkedal
Haemophilia Treatment Centre, RigshospitaletCopenhagen, Denmark
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Case Study
Accès libre | 25 juil. 2024
(Mis)Gendering bleeding disorders care: A qualitative case study of a trans person with a bleeding disorder
Accès libre | 02 août 2024
Emicizumab in two patients with acquired haemophilia A – case report
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Thomas Kartika
Division of Hematology and Medical Oncology, Department of Medicine, New York-Presbyterian/Weill Cornell Medical CenterNew York, USA
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, Corey Witenko
Department of Pharmacy, New York-Presbyterian/Weill Cornell Medical CenterNew York, USA
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, Jessica Snead
Department of Pharmacy, New York University Langone HealthBrooklyn, USA
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, Maria T DeSancho
Division of Hematology and Medical Oncology, Department of Medicine, New York-Presbyterian/Weill Cornell Medical CenterNew York, USA
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et Alana Ciolek
Department of Pharmacy, New York-Presbyterian/Weill Cornell Medical CenterNew York, USA
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Tous les volumes et éditions dans cette revue
Édition 12 (2025)
Édition 11 (2024)
Édition 10 (2023)
Édition 9 (2022)
Édition 8 (2021)
Édition 7 (2020)
Édition 6 (2019)
Édition 5 (2018)
Édition 4 (2017)
Édition 3 (2016)
Édition 2 (2015)
Édition 1 (2014)
Édition 1 (2013)