23 Artykułów
System Change
Otwarty dostęp | 23 lut 2023
Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Registries, the Hub and Spoke Model and Patient Agency
, oraz Naja Skouw-Rasmussen
European Haemophilia ConsortiumBrussels, Belgium
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Otwarty dostęp | 17 lip 2023
Access equity: key questions and challenges - A report from the 1st workshop of the European Haemophilia Consortium (EHC) Think Tank Workstream on Access Equity
Naja Skouw-Rasmussen
European Haemophilia ConsortiumBrussels, Belgium
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oraz Otwarty dostęp | 09 sie 2023
Future Care Pathways – A report from the 1st workshop of the EHC Think Tank Workstream on Future Care Pathways
Naja Skouw-Rasmussen
European Haemophilia ConsortiumBrussels, Belgium
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oraz Otwarty dostęp | 29 gru 2023
Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Access Equity and Future Care Pathways
, Naja Skouw-Rasmussen
European Haemophilia ConsortiumBrussels, Belgium
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, , oraz Dalma Hosszú
- Syreon Research InstituteBudapest, Hungary
- European Haemophilia ConsortiumBrussels, Belgium
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Clinical Research
Otwarty dostęp | 23 lut 2023
Clinical and radiological assessment of joints in people with haemophilia in Assam, Northeast India: a cross-sectional study
Bhabani Sankar Dhal
Dept of Medicine, Assam Medical CollegeDibrugarh, India
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, , , , oraz Otwarty dostęp | 17 lip 2023
Pain assessment and management in the Moroccan haemophilia population: a prospective descriptive study
Sofia Sraidi
Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco
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, Sara Naim
Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco
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, Mouna Lamchahab
Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco
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, Siham Cherkaoui
Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco
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, Meryem Qachouh
Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco
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, , oraz Nissrine Khoubila
Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco
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Otwarty dostęp | 31 paź 2023
Psychological experiences of mothers of children with severe haemophilia in Iranian culture: A phenomenological study
Fatemeh Feizi
Department of Psychology, Faculty of Psychology and Education, University of TehranTehran, Iran
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, Ali Eshghi
Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children’s Health, Shahid Beheshti University of Medical SciencesTehran, Iran
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, Manijeh Firoozi
Department of Psychology, Faculty of Psychology and Education, University of TehranTehran, Iran
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, Zeinab Shormeij
Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children’s Health, Shahid Beheshti University of Medical SciencesTehran, Iran
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, , Peyman Eshghi
Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children’s Health, Shahid Beheshti University of Medical SciencesTehran, Iran
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oraz Javad Alaghband Rad
Department of Psychiatry, Tehran University of Medical SciencesTehran, Iran
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Otwarty dostęp | 17 gru 2023
Factors associated with delays in seeking treatment for acute bleeding among persons living with haemophilia in Uganda: a cross-sectional mixed methods study
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Phillip Gitah Kasirye
- Mulago National Referral HospialKampala, Uganda
- Haemophilia Foundation of UgandaUganda
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, , , , Grace Ndeezi
- Makerere University College of Health SciencesKampala, Uganda
- Haemophilia Foundation of UgandaUganda
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, Adoke Yeka
Makerere University College of Health SciencesKampala, Uganda
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oraz Horatiu Vultur
Carol Davila University of Medicine and PharmacyBucarest, Romania
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Community Focus
Otwarty dostęp | 21 kwi 2023
The impact of the Contaminated Blood Scandal on the next generation: the state of the evidence
Sally-Anne Wherry
School of Health and Social Care, University of GloucestershireGloucester, UK
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, Liz Berragan
School of Health and Social Care, University of GloucestershireGloucester, UK
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oraz Ros Jennings
School of Health and Social Care, University of GloucestershireGloucester, UK
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Otwarty dostęp | 18 maj 2023
The strategies of parents who tell their daughters about the possibility of being a haemophilia carrier
Keiko Nozaki
Department of Clinical Education, Ashiya UniversityHyogo, Japan
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oraz Akemi Yamazaki
Division of Health Sciences, Graduate School of Medicine at Osaka UniversityOsaka, Japan
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Nurse Focus
Otwarty dostęp | 05 maj 2023
Editorial – Living, Caring, Learning: How patients shape the specialist haemophilia nurse
Otwarty dostęp | 05 maj 2023
Living, Caring, Learning – Reflections on the therapeutic relationship in haemophilia care
Otwarty dostęp | 05 maj 2023
Living, Caring, Learning – The treatment centre as family for a woman with severe haemophilia
Otwarty dostęp | 05 maj 2023
Living, Caring, Learning – Early education, active lives and tailored treatment in haemophilia care
Otwarty dostęp | 17 gru 2023
Living, Caring, Learning – Addressing challenges in the transition to adult care
Greta Mulders
haemophilia nurse specialist at Erasmus University Medical CentreRotterdam, The Netherlands
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Otwarty dostęp | 17 gru 2023
Living, Caring, Learning – Trust and teamwork in patient care
Marcela Ganzella Sisdelli
Nurse Team Leader at the Blood Center Foundation of Ribeirão PretoSão Paulo, Brazil
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Clinical Practice
Otwarty dostęp | 20 gru 2023
Recognising the importance of the research nurse and study coordinators in enhancing retention of people with haemophilia in clinical trials
, , Tami Barazani-Brutman
Sheba Medical Center, Tel HashomerTel Aviv, Israel
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, , , , , , oraz Greta Mulders
Erasmus University Medical CenterRotterdam, Netherlands
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Otwarty dostęp | 29 gru 2023
A multidisciplinary approach to optimising the virtual management of haemophilia: a roundtable meeting of UK experts
Gary Benson
Northern Ireland Haemophilia Comprehensive Care Centre, Belfast City HospitalBelfast, Northern Ireland
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, , , , David Stephensen
Kent Haemophilia and Thrombosis Centre, East Kent Hospitals University NHS Foundation TrustKent, UK
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, oraz Sarah Mangles
Haemophilia, Haemostasis and Thrombosis Centre, Basingstoke and North Hampshire HospitalBasingstoke, UK
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Case Study
Otwarty dostęp | 09 sie 2023
Management of a patient with factor X deficiency with FEIBA: a case report
oraz Otwarty dostęp | 19 paź 2023
A creative approach to managing a case of haemophilia A with inhibitors in a low-resource country: case report
Simran Bhatia
Kasturba Medical College, Manipal Academy of Higher EducationManipal, India
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, M V Archana
Division of Pediatric Hematology and Oncology, Kasturba Medical College, Manipal Academy of Higher EducationManipal, India
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, Vasudeva Bhat
Division of Pediatric Hematology and Oncology, Kasturba Medical College, Manipal Academy of Higher EducationManipal, India
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, Ganesh M Balthillya
Department of Physiotherapy, Manipal College of Health Professions, Manipal Academy of Higher EducationManipal, India
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oraz Sulochana Badagabettu
Department of Fundamentals of Nursing, Manipal College of Nursing, Manipal Academy of Higher EducationManipal, India
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Otwarty dostęp | 19 paź 2023
The first reported case of factor X deficiency in a Filipino child – case study
Kristian Dorell Masacupan
St Luke’s Medical CenterQuezon City, Philippines
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, , oraz Commentary
Otwarty dostęp | 17 gru 2023
Factor X deficiency: a comment on two recent case studies
Brian Branchford
Versiti Medical Sciences InstituteMilwaukee, Wisconsin, United States
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