Haemophilia - McMaster Experts

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Test–retest reliability of a mobile application of the patient reported outcomes burdens and experiences (PROBE) study 2024
Comparing inhibitor development in (plasma derived vs. recombinant) FVIII/FIX concentrates in severe haemophilia: Reporting on 1392 PUPs from EUHASS and canadian registries 2024
International data integration program of the WFH world bleeding disorders registry: bringing europe data to the global stage 2024
Initial results of the impact of valoctocogene roxaparvovec on pain occurrence and interference: Insights from PROBE 2023
BUILDING A GLOBAL RESOURCE FOR THE LONG-TERM FOLLOW-UP OF HEMOPHILIA PATIENTS TREATED WITH GENE THERAPY: COLLABORATION BETWEEN THE WORLD FEDERATION OF HEMOPHILIA AND NATIONAL REGISTRIES 2023
TEST-RETEST RELIABILITY ANALYSIS OF THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY 2023
Comparison of change in number of identified people with haemophilia A and factor VIII use per patient over time 2022
Empowering people with haemophilia to take control of their care and treatment through myWBDR and myPROBE-A patient-reported outcomes tool for achieving a 360-degree patient-centred evaluation 2022
Feasibility of integrating PROBE (patient reported outcomes, burdens and experiences) into a clinical care pathway to facilitate transformation to a value-based health care model in haemophilia 2022
Integration of the Mexican Registry of Coagulopathies (RMC) with PROBE 2022
Prevalence of selected bleeding and thrombotic events in persons with congenital haemophilia versus the general non-haemophilia population 2022
Using the World Federation of Haemophilia gene therapy registry for the long-term follow-up of haemophilia patients treated with gene therapy 2022
WFH world bleeding disorders registry highlights gaps in haemophilia diagnosis and management 2022
CANADIAN CLINICAL EXPERIENCE ON SWITCHING FROM OCTOCOG ALFA TO EXTENDED-HALF-LIFE FVIII DAMOCTOCOG ALFA PEGOL IN PATIENTS WITH SEVERE HAEMOPHILIA A 2022
THE WORLD FEDERATION OF HEMOPHILIA GENE THERAPY REGISTRY - A GLOBAL RESOURCE FOR THE LONG-TERM FOLLOW-UP OF HEMOPHILIA PATIENTS TREATED WITH GENE THERAPY 2022
Relationship of EQ-5D Pain Domain and Bleeds - Insights from the PROBE Study 2021
ANALYSIS OF HEMOPHILIA PATIENT IDENTIFICATION IN DIFFERENT ECONOMIC SETTINGS 2021
EQUITY IN THE USE OF PROPHYLAXIS IN CHILDREN WITH SEVERE HEMOPHILIA 2021
THE WORLD FEDERATION OF HEMOPHILIA GENE THERAPY REGISTRY 2021
WORLD BLEEDING DISORDERS REGISTRY SHOWCASES DISPARITIES IN HEMOPHILIA CARE AROUND THE WORLD 2021
Comparative PK evaluation of SHL vs EHL by non-compartmental and compartmental population PK analysis in patients with severe and moderate HA 2020
Data is the new currency: The World Bleeding Disorders Registry Data Quality Accreditation Program 2020
Developing a patient reported outcome measure to explore mental health outlook in people with Hemophilia: Development of a conceptual framework 2020
Education in people with Hemophilia - Insights from the PROBE Study 2020
Impact of Pain on Physical Activity by Persons with Hemophilia (PwH) from the HemACTIVE Patient Survey 2020
International Standard Set of Health Outcomes that matter for people living with hemophilia 2020
Quantifying the disability paradox in hemophilia 2020
Treatment adherence in people with hemophilia (PwH) who are restricted by pain: Findings from the HemACTIVE Patient Survey 2020
What the future might look like-The PROBE Study 2020
ASSESSING A POPULATION PHARMACOKINETIC MODEL OF A PLASMA-DERIVED, VON WILLEBRAND FACTOR-CONTAINING FVIII CONCENTRATE FOR BAYESIAN FORECASTING IN LOW DOSE SCENARIOS 2020
DEVELOPMENT AND TESTING OF THE ONLINE PROBE SURVEY AND THE MYPROBE APP AND INTEGRATION WITH THE CANADIAN BLEEDING DISORDER REGISTRY 2020
INTERNATIONAL STANDARD SET OF HEALTH OUTCOMES THAT MATTER FOR PEOPLE LIVING WITH HEMOPHILIA 2020
PK-GUIDED SWITCH BETWEEN STANDARD HALF-LIFE AND EXTENDED HALF-LIFE FACTOR VIII PRODUCTS 2020
REPORT ON THE ANNUAL GLOBAL SURVEY-20 YEARS ON AND MORE INFORMATIVE 2020
THE WORLD BLEEDING DISORDERS REGISTRY CELEBRATES 2 YEARS! 2020
"Problem Joint" a more patient relevant definition for joint morbidity in haemophilia 2019
Impact of acute and chronic pain on the EQ-5D: Insights from the PROBE study 2019
Part-time employment and early retirement in people with severe haemophilia: Insights from the PROBE study 2019
Physical activity in persons with hemophilia (PwH) from France (FR), Italy (ITA), and United States (US) from the hemactive patient survey 2019
Predictors for acute and chronic pain in patients with severe haemophilia in the PROBE cohort 2019
The WFH world bleeding disorders registry 2019
The Web-Accessible Population Pharmacokinetics Service-Hemophilia (WAPPS-HEMO) contribution to tailoring treatment in children: Examples for hemophilia A and B 2019
Using individual pharmacokinetic parameters on octocog alfa to predict individual pharmacokinetic parameters on efmoroctocog alfa in persons with hemophilia A 2019
A tale of two cities - comparison of perioperative practices for placement of Central Venous Access Devices (CVAD) in paediatric haemophilia patients 2018
Comparative assessment of the performance of pharmacokinetic tools for prophylactic dosing of anti-hemophilic factor recombinant plasma/albumin-free method (rAHF-PFM) concentrate in patients with Hemophilia A 2018
Quadriceps hematoma in mild hemophilia after sport injury: Case series in two subjects 2018
Study of fibrin clot ultrastructure of varying concentrations of FVIII deficient plasma using scanning electron microscopy 2018
The PROBE Data Dashboard - A new tool for real-time data visualization and analysis of patient reported outcomes 2018
The PROBE Study - Global burden of bleeding from the mouth in Haemophilia - a call to action 2018
The WFH World Bleeding Disorders Registry 2018
coreHEM: A multi-stakeholder approach to developing a core outcome set for gene therapy in hemophilia 2018
eLearning of pharmacokinetic monitoring in hemophilia with application in the clinical practice 2018
Comparative assessment of the performance of pharmacokinetic tools for prophylactic dosing of factor VIII concentrate in patients with hemophilia A 2018
High compliance to prophylaxis regimens in adult and paediatric hemophilia B patients receiving RIX-FP in clinical studies 2018
Occurrence and impact of pain among patients living with hemophilia: An analysis from the patient reported outcomes, burdens and experiences (PROBE) study 2018
Online course of pharmacokinetic monitoring in hemophilia with application in the clinical practice 2018
Perioperative management for patients with congenital factor XI deficiency 2018
The WFH world bleeding disorders registry 2018
Anticoagulant Re-Initiation Following Intracranial Hemorrhage in Non-Valvular Atrial Fibrillation: Practices and Perceptions of Thrombosis Experts, Neurologists and Neurosurgeons 2017
Estimating The Global Annual Bleed Rate In Haemophilia 2017
Inhibitor Development in Previously Untreated Patients with Severe Haemophilia a Treated with Human-CL RHFVIII, a New Generation Recombinant FVIII of Human Origin 2017
The Development of the World Bleeding Disorders Registry Pilot Phase 2017
A risk based decision making framework - stakeholder consultation essential to appropriate minimization of blood safety risk 2016
Adherence and the relationship to frequency of infusions in pediatric patients with hemophilia A and B 2016
Central venous access device (CVAD) insertion procedure for pediatric patients with severe hemophilia A: trends in Factor VIII (FVIII) replacement therapy 2016
Development of a questionnaire to identify hemophilia A patient and clinician discussion opportunities around prophylaxis treatment options 2016
Genomic approaches to bleeding disorders 2016
Hemophilia research and clinical care needs: Regional variation in future priorities 2016
Home therapy consensus in an under resourced hemophilia setting 2016
Measuring the quality of hemophilia care across different settings: a set of performance indices derived from demographics data 2016
Point of care ultrasonography in hemophilia: impact of prior experience and success on competency assessment/evaluation 2016
The patient reported outcomes burdens and experiences (PROBE) study phase 1 methodology and feasibility results 2016
When health care professionals express themselves: results overview of the qualitative phase of Hero initiative 2016
Evidence Based Haemophilia Care - Current Status and Where to Go? 2016
Haemophilia Research and Clinical Care Needs: Assessing Future Priorities 2016
Health Status of Elderly Persons with Hemophilia Compared with the General Population: The Sphera Study 2016
Nonacog Alfa as Prophylaxis in Moderately Severe to Severe (FIX:C <= 2%) Hemophilia B Patients: Identifying Clinical Predictors of Response 2016
Recombinant Fusion Protein Linking Coagulation Factor IX with Albumin (RIX-FP) in Previously Treated Children with Hemophilia B: Efficacy and Safety from a Phase 3 Pivotal Clinical Trial 2016
The Patient Reported Outcomes, Burdens, and Experiences (Probe) Phase 1 Study Methodology and Feasibility 2016
Study Design: A Critical Aspect of Research 2015
Population pharmacokinetics for busy clinicians and active patients: how to get the most out of it? 2015
An evaluation of whether the ankle is now the dominant site of chronic hemophilic arthropathy in young adults with severe hemophilia 2014
An indirect comparison of the efficacy of prophylactic use of rFIXFc and other rFIX products and simulation of the effect of compliance on effectiveness 2014
An indirect comparison of the efficacy of prophylactic use of rFVIIIFc and other rFVIII products and model of the effect of compliance 2014
Assessment of patient preferences and perceived value of the comprehensive interdisciplinary combined hemophilia and orthopedic clinic using a validated questionnaire 2014
Cardiac risk factors in older patients with hemophilia: Report of the age related cardiovascular disease in hemophilia epidemiologic research (archer) study 2014
Cultivating and Preparing Future Leaders 2014
Factor VII deficiency patients: 5 years factors concentrates utilization trend based on the Canadian Hemophilia Assessment and Resource Management System (CHARMS) 2014
Factor XIII (FXIII) deficiency in Canada: Description of the National Cohort 2014
Factors influencing quality of life in Chinese adults with hemophilia: Results from the HERO study 2014
Fathers' and Mothers' Perceptions and Communication on Carrier Status and Diagnosis of Congenital Haemophilia: Global Results from the Haemophilia Experiences, Results and Opportunities (HERO) Study 2014
Fifteen years of Canadian "tailored" prophylaxis: Results from the Canadian Hemophilia Primary Prophylaxis Study (CHPS) 2014
Investigating Attitudes and Practices of Canadian Physiotherapists on Sexual Health: A Comparison to the HERO Dataset 2014
Pharmacokinetics (PK) of recombinant and plasma-derived factor IX (FIX) products in pediatric patients with severe hemophilia B 2014
Physiotherapy and point of care ultrasonography in the management of hemophilia: Training phase 2014
Safety of antihemophilic factor recombinant plasma/albumin-free method [rAHF-PFM] in hemophilia A patients with low titer inhibitors or a personal history of inhibitor: A meta-analysis of ADVATE Post-Authorization Safety Studies data 2014
Speaking as one voice: Uniting and educating advocates 2014
The Rise of the Patient Voice 2014
What is known about care of a newborn with hemophilia? 2014
Your inhibitor treatment plan and you: Is your treatment working for you? 2014
Does product type influence the development on inhibitor in PTPs and PUPs? 2014
Does product type influence the development on inhibitor in PTPs and PUPs? 2014
Hemophilia and von Willebrand disease patients' perceptions of care at US Hemophilia Treatment Centers 2014
Investigating determinants of inhbitor development to factor VIII molecules in previously treated hemophilia A patients 2014
The use of FVIII concentrate in hemophilia A patients with low titer inhibitors or a personal history of inhibitor: a meta-analysis of advate post-authorization safety studies in different countries 2014
Access to haemophilia treatment centres (HTCS), treatment and information sources: european results from the hero study 2013
Demographic characteristics of European respondents in the hero study 2013
Effect of turoctocog alfa on quality of life of children, adolescents and adults with haemophilia A: results from two clinical trials 2013
Effects of haemophilia on relationships, intimacy and family: european results from the hero study 2013
Quality of life in adults with haemophilia: european results from the hero study 2013
Patterns of factor concentrate prophylaxis in adults with severe hemophilia: A multicentre Canadian study 2012
A feasibility study of "managing hemophilia online": An Internet-based self-management and transitional care program for teens 2012
Assessment of treatment-related risk factors for inhibitor development in previously untreated hemophilia A patients: Different statistical approaches 2012
Central venous line insertion and factor replacement therapy in patients with hemophilia A: A local experience 2012
Clinical presentation and management of adult patients responding to the Hemophilia Experiences Results Opportunities (HERO) study 2012
Clinical presentation and management of pediatric hemophilia patients as reported by parents surveyed in the Haemophilia Experiences Results Opportunities (HERO) survey 2012
Demographic characteristics of adult patient respondents in the Hemophilia Experiences Results Opportunities (HERO) study 2012
Demographic characteristics of parents of children/adolescents with hemophilia responding in the Hemophilia Experiences Results Opportunities (HERO) study 2012
Diagnostic usefulness of adenosine triphosphate release assays and aggregation tests with native or platelet-count-adjusted, platelet-rich plasma 2012
Hemophilia knowledge and frequently used and valued information sources: Patient/parent perceptions from the Hero study 2012
Impact of hemophilia on interpersonal relationships: Assessment of parent/caregiver respondents in the hemophilia experiences, results, opportunities (hero) study 2012
Impact of hemophilia on relationships with partners, family, and friends: Assessment of adult patient respondents in the hemophilia experiences, results, opportunities (HERO) study 2012
Low bone mineral density and increased fat mass in boys with severe hemophilia 2012
Nutritional intake and bone mineral density in boys with severe hemophilia 2012
Osteochondral Lesions of the Ankle Joint in Patients with Hemophilia A: A Retrospective Case Series 2012
Pharmacokinetics (PK) of recombinant and plasma-derived factor VIII (FVIII) products in pediatric patients with severe hemophilia A 2012
Physical activity measured by high-frequency accelerometry in boys with hemophilia 2012
Predictors of success of immune tolerance induction in hemophilia A patients with high-responding inhibitors: A score from the Italian registry 2012
Qualitative and quantitative assessment of sexual intimacy in adult patients in the hemophilia experiences results opportunities (HERO) study 2012
Quality of life (QOL) and well-being of hemophilia patients and parents managing hemophilia: Hero study analysis 2012
The Canadian experience: Severe factor V deficiency 2012
Understanding Health and Treatment Decision-Making among Youth with Hemophilia: A Qualitative Approach 2012
Understanding the impact of hemophilia on the family: A pilot study of the PedsQL family impact module 2012
What do Canadian men living with hemophilia need to know to facilitate optimal disease management? A mixed methods approach 2012
Concentrate type and dose in hemophilia A patients: is there an independent effect on risk of inhibitor formation? 2012
The use of the clinical trial design in Hemophilia: methodological considerations 2012
Usability testing of an online transition program for adolescents with hemophilia 2012
A review of experiences with external quality assessment challenges for several platelet function disorder assays offered by the North American specialized coagulation laboratory association 2011
Abstracts of the HTRS/NASCOLA Scientific Symposium, April 15-17, 2010 Northwestern Memorial Hospital, Chicago, Illinois, Poster Presentations - Categories: Young Investigators, Senior Investigators, Information of Interest 2011
Bleeding symptoms and risks in undefined bleeding disorders: results from a prospective study 2011
Construction and validation of a clinical scoring model for heparin-induced thrombocytopenia (HIT) 2011
The fraction of recombinant factor VIII unable to bind VWF is inactive 2011
Predictive model to assess the risk of inhibitor development in children with severe and moderate haemophilia A - results of a multicenter cohort study 2011
Predictors of inhibitor development in haemophilia A previously untreated patients: the role of factor concentrate type. An individual patient data meta-analysis 2011
ADAMTS13 levels may influence the clinical expression of severe hemophilia A 2010
Adherence with hemophilia treatments in Canada: a survey of hemophilia healthcare professionals 2010
Bioequivalence of B-domain deleted and plasma derived FVIII concentrates 2010
Bone mineral density in hemophilia patients: a meta-analysis 2010
Change in bone mineral density in patients with severe hemophilia A and B between the ages of 20 and 50: a pilot study 2010
Clotting factor concentrates given to prevent bleeding and bleeding-related complications in people with hemophilia A or B 2010
Comprehensive care team approach to bleeding disorder patient care: benefits of team meeting 2010
Effect of plasma-derived or recombinant factor VIII on inhibitor development: a systematic review 2010
Evaluation of neonatal hemostasis 2010
Expected value of information of future hemophilia trials 2010
Mixing studies: use of specific factor-deficient plasma allows for confirmation of a single factor deficiency as the cause of an elevated APTT 2010
Predictors of success in immune tolerance induction (ITI) in haemophilia A patients with high-responding inhibitors: the Italian ITI registry 2010
Recombinant factor VIIa concentrate versus plasma derived concentrates for the treatment of acute bleeding episodes in people with haemophilia and inhibitors 2010
Standardization of platelet function testing in bleeding disorders 2010
The development of an innovative internet-based educational program to promote self-management for teens with hemophilia 2010
The year in review: describing prophylaxis and adherence in children with severe hemophilia A using patient infusion diaries 2010
Effect of plasma-derived or recombinant factor VIII on inhibitor development. A systematic review 2010
An international evaluation of clinical laboratory practices for Lupus anticoagulant testing \textbar Request PDF 2009
Evaluation of a method to assess platelet function in individuals with thrombocytopenia 2009
Heterogeneity in platelet alpha-granule content assessed by evaluation of alpha-granule protein storage in Quebec platelet disorder 2009
International clinical trials are the best way to improve global haemophilia care? No 2009
Platelet adhesion to multimerin 1: influences of shear, platelet activation and platelet receptors 2009
A survey of factor prophylaxis in Canadian patients with hemophilia 2008
Causes of death among Italian hemophiliacs: results from the Italian Association of Hemophilia Centers (AICE) Survey 2008
Clinical audit of fresh frozen plasma usage in Umbria, Italy 2008
Critical appraisal of five international guidelines on fresh frozen plasma clinical use 2008
Evaluation of urokinase plasminogen activator in urine from individuals with Quebec platelet disorder 2008
Factor IX pharmacokinetics: differences between plasma‐derived and recombinant products and the clinical and economic implications: a meeting report 2008
Haemophilia A and B and other rare bleeding disorders: an Italian retrospective survey on the intracranial haemorrhagic episodes 2008
Immune tolerance induction (ITI) in patients with hemophilia A and inhibitors: the Italian retrospective-prospective registry - the PROFIT study 2008
Inhibitor development in mild/moderate haemophilia: could influenza vaccination have been the trigger? 2008
Launch of toll free telephone line 2008
Megakaryocytes from individuals with the Quebec platelet disorder show a maturation related defect in urokinase plasminogen activator expression 2008
Pharmacokinetics of reformulated B-domain deleted recombinant factor VIII (BDD-rFVIII) concentrate using chromogenic and one-stage assays with pooled normal plasma (PNP) and refacto laboratory standard (RLS) 2008
Platelet function in the laboratory and its quality control 2008
Replacement therapy with recombinant FIX - multicentre evaluation of current dosing practice in Italy 2008
The haemophilia registry of the Italian Association of Haemophilia Centres 2008
The prevalence of patients with inhibitor antibodies in Canadians with hemophilia A and B, with application of a new clinical classification system 2008
Mutation Analysis in F9 Gene of 17 Families with Haemophilia B from Iran 2004
Continuous infusion 2003
Safety, efficacy and lessons from continuous infusion with rFVIIa 1998
Contrasting Approaches in the Implementation of GRADE Methodology in Guidelines for Haemophilia and Von Willebrand Disease. 2024
A core outcome set for prophylaxis and perioperative treatment of von Willebrand disease: The coreVWD initiative. 2024
Development of the World Federation of Hemophilia Shared Decision-Making Tool. 2024
Development of the coreHEM mental health patient-reported outcome measure - A novel mental health outlook measure for people with haemophilia. 2024
Development of a Plasminogen Population PK model supporting prophylactic replacement therapy for Plasminogen deficient patients within the WAPPS‐Hemo platform. 30:988-997. 2024
Estimated prophylactic dose required to achieve 3% trough as a function of age and concentrate class in multi‐country severe WAPPS‐Hemo haemophilia patients. 30:925-932. 2024
Health utilities in adults with hemophilia A: A retrospective cohort study. 30:733-742. 2024
Rare bleeding disorders: Advances in management. 30:60-69. 2024
Canadian clinical experience on switching from standard half‐life recombinant factor VIII (rFVIII), octocog alfa, to extended half‐life rFVIII, damoctocog alfa pegol, in persons with haemophilia A ≥ 12 years followed in a Comprehensive Hemophilia Care Program in Canada. 30:345-354. 2024
Association of patient, treatment and disease characteristics with patient‐reported outcomes: Results of the ECHO Registry. 30:106-115. 2024
Bleeding events in people with congenital haemophilia A without factor VIII inhibitors receiving prophylactic factor VIII treatment: A systematic literature review. 29:954-962. 2023
Long‐term immunogenicity, efficacy and tolerability of simoctocog alfa in patients with severe haemophilia A who had completed the NuProtect study in previously untreated patients. 29:1005-1012. 2023
Reported prevalence of von Willebrand disease worldwide in relation to income classification. 29:975-986. 2023
Von Willebrand Disease: Gaining a global perspective. 29:1104-1112. 2023
Cost‐utility analysis of emicizumab for the treatment of severe hemophilia A patients in Canada. 29:488-497. 2023
Humanistic burden of problem joints for children and adults with haemophilia. 29:608-618. 2023
Prophylaxis use of clotting factor replacement products in people with non‐severe haemophilia: A review of the literature. 29:33-44. 2023
Switching from standard to extended half‐life FVIII prophylaxis in haemophilia A: Comparison of factor product use, bleed rates and pharmacokinetics. 28:e237-e244. 2022
Emicizumab state‐of‐the‐art update. 28:103-110. 2022
Outcomes of long‐term von Willebrand factor prophylaxis use in von Willebrand disease: A systematic literature review. 28:373-387. 2022
Response to “The 2021 von Willebrand disease guidelines: Clarity and controversy”. 28:371-372. 2022
A preliminary application of a haemophilia value framework to emerging therapies in haemophilia. 28:9-18. 2022
Efficacy and safety evaluation of Fanhdi^®, a plasma‐derived factor VIII/ von Willebrand factor concentrate, in Von Willebrand's disease patients undergoing surgery or invasive procedures: A prospective clinical study. 28:e23-e27. 2022
Sexual issues in people with haemophilia: Awareness and strategies for overcoming communication barriers. 28:36-41. 2022
Evaluation of the sexual health in people living with hemophilia. 27:993-1001. 2021
Converting factor and nonfactor usage into a single metric to facilitate benchmarking the resources consumed for haemophilia care across jurisdictions and over time. 27:e596-e608. 2021
Factor product utilization and health outcomes in patients with haemophilia A and B on extended half‐life concentrates: A Canadian observational study of real‐world outcomes. 27:751-759. 2021
Patient preferences and priorities for haemophilia gene therapy in the US: A discrete choice experiment. 27:769-782. 2021
The effect of emicizumab prophylaxis on long‐term, self‐reported physical health in persons with haemophilia A without factor VIII inhibitors in the HAVEN 3 and HAVEN 4 studies. 27:854-865. 2021
Comparison of quality of life, and emotional and functional profiles in older people with and without severe haemophilia. 27:e525-e529. 2021
Comparison of single subject and population‐based pharmacokinetics for optimizing prophylaxis with simoctocog alfa in patients with haemophilia A. 27:626-633. 2021
Evolution of haemophilia integrated care in the era of gene therapy: Treatment centre’s readiness in United States and EU. 27:511-514. 2021
Patterns of joint damage in severe haemophilia A treated with prophylaxis. 27:666-673. 2021
Vaccination against COVID‐19: Rationale, modalities and precautions for patients with haemophilia and other inherited bleeding disorders. 27:515-518. 2021
Pharmacokinetic implications of dosing emicizumab based on vial size: A simulation study. 27:358-365. 2021
Evidence of a disability paradox in patient‐reported outcomes in haemophilia. 27:245-252. 2021
Outcomes for studies assessing the efficacy of hemostatic therapies in persons with congenital bleeding disorders. 27:211-220. 2021
Identified unmet needs and proposed solutions in mild‐to‐moderate haemophilia: A summary of opinions from a roundtable of haemophilia experts. 27:25-32. 2021
Non‐severe haemophilia: Is it benign? – Insights from the PROBE study. 27:17-24. 2021
Challenges and key lessons from the design and implementation of an international haemophilia registry supported by a pharmaceutical company. 26:966-974. 2020
Gene therapy to cure haemophilia: Is robust scientific inquiry the missing factor?. 26:931-933. 2020
The role of telemedicine in the delivery of health care in the COVID‐19 pandemic. 26:e230-e231. 2020
High adherence to prophylaxis regimens in haemophilia B patients receiving rIX‐FP: Evidence from clinical trials and real‐world practice. 26:637-642. 2020
The World Federation of Hemophilia Annual Global Survey 1999‐2018. 26:591-600. 2020
World Federation of Hemophilia Gene Therapy Registry. 26:563-564. 2020
Development and evaluation of the population pharmacokinetic models for FVIII and FIX concentrates of the WAPPS‐Hemo project. 26:384-400. 2020
Multicentre pharmacokinetic evaluation of rFVIII‐Fc (efmoroctocog alfa) in a real life and comparison with non‐extended half‐life FVIII concentrates. 26:282-289. 2020
Achieving the unimaginable: Health equity in haemophilia. 26:17-24. 2020
An international survey to inform priorities for new guidelines on von Willebrand disease. 26:106-116. 2020
Clinical application of Web Accessible Population Pharmacokinetic Service—Hemophilia (WAPPS‐Hemo): Patterns of blood sampling and patient characteristics among clinician users. 26:56-63. 2020
Exploring regional variations in the cross‐cultural, international implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) study. 25:365-372. 2019
Outcomes indicators and processes in transitional care in adolescents with haemophilia: A Delphi survey of Canadian haemophilia care providers. 25:296-305. 2019
The 1st WFH Gene Therapy Round Table: Understanding the landscape and challenges of gene therapy for haemophilia around the world. 25:189-194. 2019
Test‐retest properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire and its constituent domains. 25:75-83. 2019
Rate and appropriateness of polypharmacy in older patients with hemophilia compared with age‐matched controls. 24:726-732. 2018
Core outcome set for gene therapy in haemophilia: Results of the coreHEM multistakeholder project. 24:e167-e172. 2018
Haemophilia clinical care and research needs: Assessing priorities. 24:e270-e273. 2018
Methodologies for data collection in congenital haemophilia with inhibitors (CHwI): critical assessment of the literature and lessons learned from recombinant factor VIIa. 24:536-547. 2018
Genotypes, phenotypes and whole genome sequence: Approaches from the My Life Our Future haemophilia project. 24:87-94. 2018
Past, present and future of haemophilia gene therapy: From vectors and transgenes to known and unknown outcomes. 24:60-67. 2018
Point‐of‐care ultrasonography in haemophilia care: Training and competency for muscular haematomas. 24:335-337. 2018
World bleeding disorders registry: The pilot study. 24:e113-e116. 2018
A brief survey of clinicians’ perceptions of parent preferences for involvement in obstetrical and perinatal management decisions in haemophilia. 24:e80-e83. 2018
Immunogenicity, efficacy and safety of Nuwiq^® (human‐cl rhFVIII) in previously untreated patients with severe haemophilia A—Interim results from the NuProtect Study. 24:211-220. 2018
Comorbidities in persons with haemophilia aged 60 years or more compared with age‐matched people from the general population. 24:e6-e10. 2018
Establishing the appropriate primary endpoint in haemophilia gene therapy pivotal studies. 23:643-644. 2017
Point of care ultrasound in haemophilia: Building a strong foundation for clinical implementation. 23:648-651. 2017
Exploring some intersections between pharmacokinetics, factor VIII measurement and human morphometrics – impact of recent advances in haemophilia study design on our understanding of optimal haemophilia treatment. 23:488-490. 2017
Switching to extended half‐life products in Canada – preliminary data. 23:e365-e367. 2017
Indirect comparisons of efficacy and weekly factor consumption during continuous prophylaxis with recombinant factor VIII Fc fusion protein and conventional recombinant factor VIII products. 23:408-416. 2017
Molecular phenotype and bleeding risks of an inherited platelet disorder in a family with a RUNX1 frameshift mutation. 23:e204-e213. 2017
Research and policy implications of a recently published controlled study in previously untreated haemophilia patients at high risk of inhibitor development. 23:350-352. 2017
Target plasma factor levels for personalized treatment in haemophilia: a Delphi consensus statement. 23:e170-e179. 2017
Natural history and clinical characteristics of inhibitors in previously treated haemophilia A patients: a case series. 23:255-263. 2017
Measuring the quality of haemophilia care across different settings: a set of performance indicators derived from demographics data. 23:e1-e7. 2017
The demographics, treatment characteristics and quality of life of adult people with haemophilia in China – results from the HERO study. 23:89-97. 2017
Evaluation of the utility of the ISTH‐BAT in haemophilia carriers: a multinational study. 22:912-918. 2016
Care models in the management of haemophilia: a systematic review. 22:31-40. 2016
Improving comprehensive care in the haemophilia community: building on the HERO Study. 22:e320-e322. 2016
Integrated multidisciplinary care for the management of chronic conditions in adults: an overview of reviews and an example of using indirect evidence to inform clinical practice recommendations in the field of rare diseases. 22:41-50. 2016
Methodology for the development of the NHF‐McMaster Guideline on Care Models for Haemophilia Management. 22:17-22. 2016
NHF‐McMaster Guideline on Care Models for Haemophilia Management. 22:6-16. 2016
Understanding stakeholder important outcomes and perceptions of equity, acceptability and feasibility of a care model for haemophilia management in the US: a qualitative study. 22:23-30. 2016
Assessments of outcome in haemophilia – a patient perspective. 22:e208-e209. 2016
FVIII inhibitor development according to concentrate: data from the EUHASS registry excluding overlap with other studies. 22:e36-e38. 2016
First prospective report on immune tolerance in poor risk haemophilia A inhibitor patients with a single factor VIII/von Willebrand factor concentrate in an observational immune tolerance induction study. 22:87-95. 2016
A systematic review of definitions and reporting of bleeding outcome measures in haemophilia. 21:731-735. 2015
Cardiovascular disease (CVD) in Canadians with haemophilia: Age‐Related CVD in Haemophilia Epidemiological Research (ARCHER study). 21:736-741. 2015
Point of care ultrasonography in haemophilia care: recommendations for training and competency evaluation. 21:828-831. 2015
Heterogeneity of information regarding inhibitors in the product monographs of antihaemophilic factors in North America. 21:e448-e451. 2015
Experience with central venous access devices (CVADs) in the Canadian hemophilia primary prophylaxis study (CHPS). 21:469-476. 2015
Cardiovascular disease prevalence and relevance in haemophilia: a scoping review. 21:e156-e166. 2015
Pharmacokinetics of plasma‐derived vs. recombinant FVIII concentrates: a comparative study. 21:204-209. 2015
Treatment decision‐making among Canadian youth with severe haemophilia: a qualitative approach. 21:180-189. 2015
Development of haemophilic arthropathy of the ankle: results of a Delphi consensus survey on potential contributory factors. 21:116-123. 2015
Haemophilia Experiences, Results and Opportunities (HERO) study: treatment‐related characteristics of the population. 21:e26-e38. 2015
A pilot randomized control trial to evaluate the feasibility of an Internet‐based self‐management and transitional care program for youth with haemophilia. 20:784-793. 2014
Developing a two‐sided intervention to facilitate shared decision‐making in haemophilia: decision boxes for clinicians and patient decision aids for patients. 20:800-806. 2014
Patient data meta‐analysis of Post‐Authorization Safety Surveillance (PASS) studies of haemophilia A patients treated with rAHF‐PFM. 20:777-783. 2014
Answering relevant research questions via careful observation of clinical practice: a fresh look at the old way forward. 20:604-606. 2014
Assessment of the impact of treatment on quality of life of patients with haemophilia A at different ages: insights from two clinical trials on turoctocog alfa. 20:527-534. 2014
First analysis of 10‐year trends in national factor concentrates usage in haemophilia: data from CHARMS, the Canadian Hemophilia Assessment and Resource Management System. 20:e251-e259. 2014
Haemophilia Experiences, Results and Opportunities (HERO) Study: Influence of haemophilia on interpersonal relationships as reported by adults with haemophilia and parents of children with haemophilia. 20:e287-e295. 2014
Joint WFH‐ISTH session: issues in clinical trial design. 20:137-144. 2014
Patterns of tertiary prophylaxis in Canadian adults with severe and moderately severe haemophilia B. 20:e199-e204. 2014
Switching clotting factor concentrates: considerations in estimating the risk of immunogenicity. 20:200-206. 2014
What should men living with haemophilia need to know? The perspectives of Canadian men with haemophilia. 20:219-225. 2014
Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographics. 20:44-51. 2014
Pharmacokinetics of recombinant and plasma‐derived factor VIII products in paediatric patients with severe haemophilia A. 20:e100-e101. 2014
A survey of patients with haemophilia to understand how they track product used at home. 19:e289-e295. 2013
What should men living with severe haemophilia need to know? The perspectives of Canadian haemophilia health care providers. 19:503-510. 2013
World Federation of Hemophilia: 50 years of advancing treatment for all. 19:475-480. 2013
Bleeding disorders, menorrhagia and iron deficiency: impacts on health‐related quality of life. 19:385-391. 2013
The Rodin (Research Of Determinants of INhibitor Development among PUPs with haemophilia) study: the clinical conundrum from the perspective of haemophilia treaters. 19:351-354. 2013
A Canadian survey of self‐infusion practices in persons with haemophilia A. 18:e403-e405. 2012
The fraction of recombinant factor VIII:Ag unable to bind von Willebrand factor has no FVIII coagulant activity: studies in vitro. 18:917-925. 2012
Haemophilia prophylaxis: how can we justify the costs?. 18:680-684. 2012
The importance of haemophilia treatment centre administrators in patient care. 18:e366-e367. 2012
Assessment of von Willebrand disease as a risk factor for primary postpartum haemorrhage. 18:593-597. 2012
Global haemostasis and point of care testing. 18:81-88. 2012
Haemophilia care – past, present and future from a patient perspective. 18:3-5. 2012
WFH: Closing the global gap – achieving optimal care. 18:1-12. 2012
A study of variations in the reported haemophilia B prevalence around the world. 18:e91-e94. 2012
Low prevalence of inhibitor antibodies in the Canadian haemophilia population. 18:e254-e259. 2012
Management of bleeding disorders: basic science. 18:8-14. 2012
Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. 18:e101-e114. 2012
Understanding FVIII/VWF complex – report from a symposium of XXIX WFH meeting 2010. 18:469-475. 2012
Exploring internet needs and use among adolescents with haemophilia: a website development project. 18:216-221. 2012
Central nervous system bleeding in patients with rare bleeding disorders. 18:34-38. 2012
Intracranial haemorrhage in the Italian population of haemophilia patients with and without inhibitors. 18:39-45. 2012
Comparing bleed frequency and factor concentrate use between haemophilia A and B patients. 17:872-874. 2011
Adherence with haemophilia treatments: a survey of haemophilia healthcare professionals in Canada. 17:816-817. 2011
Immune tolerance induction for a patient with factor IX inhibitors - a case report. 17:315-315. 2011
Towards comprehensive care in transition for young people with haemophilia. 16:848-857. 2010
Bleeding disorders in neonates. 16:168-175. 2010
Building our global family – achieving treatment for all. 16:1-10. 2010
New developments in laboratory diagnosis and monitoring. 16:61-66. 2010
Mortality and causes of death in Italian persons with haemophilia, 1990–2007. 16:437-446. 2010
A study of variations in the reported haemophilia A prevalence around the world. 16:20-32. 2010
Global data and haemophilia care trends: commentary. 16:18-19. 2010
Thrombin generation in vitro in the presence of by‐passing agents in siblings with severe haemophilia A. 16:e210-e215. 2010
Undetected factor VIII in a patient with type 3 von Willebrands disease mistaken as severe haemophilia A. 15:1258-1261. 2009
Clinical trials and haemophilia: does the Bayesian approach make the ideal and desirable good friends?. 15:900-903. 2009
Performance of recalibrated ReFacto^® laboratory standard in the measurement of FVIII plasma concentration via the chromogenic and one‐stage assays after infusion of recalibrated ReFacto^® (B‐domain deleted recombinant factor VIII). 15:779-787. 2009
Errata. 15:637-637. 2009
Italian Registry of Haemophilia and Allied Disorders. Objectives, methodology and data analysis (vol 14, pg 444, 2008). 15:637-637. 2009
Patients’, physicians’, and pharmacists’ preferences towards coagulation factor concentrates to treat haemophilia with inhibitors: results from the COHIBA Study. 15:473-486. 2009
The plasma concentration of activated protein C appears normal in patients with haemophilia. 15:566-570. 2009
Cardiac surgery in patients with haemophilia B: a case report and review of the literature. 15:108-113. 2009
Factor VII deficiency: clinical manifestation of 717 subjects from Europe and Latin America with mutations in the factor 7 gene. 15:267-280. 2009
Orthopaedic surgery in haemophilia patients with inhibitors: a practical guide to haemostatic, surgical and rehabilitative care. 15:227-239. 2009
Treatment and prevention of acute bleedings in von Willebrand disease – efficacy and safety of Wilate^®, a new generation von Willebrand factor/factor VIII concentrate. 15:122-130. 2009
The use of prophylaxis in 2663 children and adults with haemophilia: results of the 2006 Canadian national haemophilia prophylaxis survey. 14:923-930. 2008
Laboratory issues in bleeding disorders. 14:93-103. 2008
WFH – the cornerstone of global development: 45 years of progress. 14:1-9. 2008
Italian Registry of Haemophilia and Allied Disorders. Objectives, methodology and data analysis. 14:444-453. 2008
A prospective surveillance study of factor VIII inhibitor development in the Canadian haemophilia A population following the switch to a recombinant factor VIII product formulated with sucrose. 14:281-286. 2008
Recommendations for reporting economic evaluations of haemophilia prophylaxis: a nominal groups consensus statement on behalf of the Economics Expert Working Group of The International Prophylaxis Study Group. 14:127-132. 2008
Utilization of recombinant activated factor VII in southern Ontario in 85 patients with and without haemophilia. 13:518-526. 2007
Sonography for assessment of haemophilic arthropathy in children: a systematic protocol. 13:293-304. 2007
Trends in the utilization and wastage of coagulation factor concentrates: the application of a regional tracking programme. 13:271-278. 2007
Confusion around the official classification of arthropathy. 13:117-119. 2007
Congenital platelet disorders: overview of their mechanisms, diagnostic evaluation and treatment. 12:128-136. 2006
Treatment for all: a vision for the future. 12:169-173. 2006
An illustrative case and a review on the dosing of recombinant factor VIIa in congenital factor XI deficiency. 12:223-227. 2006
Occurrence of inhibitors in previously untreated or minimally treated patients with haemophilia A after exposure to a plasma‐derived solvent‐detergent factor VIII concentrate. 12:128-132. 2006
Canadian multi‐institutional survey of immune tolerance therapy (ITT) – experience with the use of recombinant factor VIII for ITT. 12:1-6. 2006
Differences between patients’, physicians’ and pharmacists’ preferences for treatment products in haemophilia: a discrete choice experiment. 11:589-597. 2005
Can activated recombinant factor VII be used to postpone the exposure of infants to factor VIII until after 2 years of age?. 11:335-339. 2005
Handheld computers and paper diaries for documenting the use of factor concentrates used in haemophilia home therapy: a qualitative study. 11:216-226. 2005
A survey of factor prophylaxis in the Canadian haemophilia A population. 10:679-683. 2004
Comparing hand‐held computers and paper diaries for haemophilia home therapy: a randomized trial. 10:698-704. 2004
What is a cure and how do we get there?. 10:115-118. 2004
Continuous infusion of B‐domain deleted recombinant factor VIII (ReFacto) in patients with haemophilia A undergoing surgery: clinical experience. 10:452-458. 2004
Costs of on‐demand and prophylactic treatment for severe haemophilia in Norway and Sweden. 10:515-526. 2004
Relationships between factor VIII:Ag and factor VIII in recombinant and plasma‐derived factor VIII concentrates. 10:459-469. 2004
On‐demand vs. prophylactic treatment for severe haemophilia in Norway and Sweden: differences in treatment characteristics and outcome. 9:555-566. 2003
Continuous intravenous infusion of a plasma‐derived factor IX concentrate (Mononine^®) in haemophilia B. 9:164-172. 2003
A randomized study of alpha‐interferon plus ribavirin for 6 months or 12 months for the treatment of chronic hepatitis C in patients with bleeding disorders. 8:129-135. 2002
Total thrombin‐activatable fibrinolysis inhibitor (TAFI) antigen and pro‐TAFI in patients with haemophilia A. 7:557-560. 2001
Sustained and therapeutic delivery of factor IX in nude haemophilia B mice by encapsulated C2C12 myoblasts: concurrent tumourigenesis. 7:207-214. 2001
Suggestions for the management of factor VIII inhibitors. 6:52-59. 2000
Loss of factor VIII activity during storage in PVC containers due to adsorption. 6:89-92. 2000
Haemostatic and replacement therapy in von Willebrand disease. 5:57-59. 1999
von Willebrand disease: an update in the Åland islandsSummary of a Nordic Symposium on von Willebrand disease, 24–25 September 1998, Mariehamn, Åland. 5:1-6. 1999
Efficacy of a high purity, chemically treated and nanofiltered factor IX concentrate for continuous infusion in haemophilia patients undergoing surgery. 5:96-96. 1999
Causes of death in Canadians with haemophilia 1980-1995. Association of Hemophilia Clinic Directors of Canada.. 4:714-720. 1998
Causes of death in Canadians with haemophilia 1980–1995. 4:714-720. 1998
Safety, efficacy and lessons from continuous infusion with rFVIIa. rFVIIa-CI Group.. 4:564-567. 1998
Multifocal pseudotumour in a single limb. 3:50-53. 1997
Continuous infusion instead of bolus injections of factor concentrate?. 2:189-191. 1996
Home therapy with continuous infusion of factor VIII after minor surgery or serious haemorrhage. 2:207-210. 1996
Pharmacokinetic properties of two factor VIII concentrates with single and double viral inactivation. 2:160-165. 1996
The fixed flexed and subluxed knee in the haemophilic child: what should be done?. 2:47-50. 1996
The feasibility of using concentrates containing factor IX for continuous infusion. 1:103-110. 1995

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