NBDF showcases a wide array of findings from the latest in bleeding disorders research at our annual Bleeding Disorders Conference.
![Real-world treatment patterns, health outcomes, and healthcare resource use among persons with hemophilia A](/sites/default/files/styles/research_image/public/research/icons_qualityoflife_outcomesresearch.png?itok=IC9BvVFq)
Real-world treatment patterns, health outcomes, and healthcare resource use among persons with hemophilia A
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
![The World Federation of Hemophilia World Bleeding Disorders Registry: A Two-year Update](/sites/default/files/styles/research_image/public/research/icons_clinical_research.png?itok=YXjrvzh4)
The World Federation of Hemophilia World Bleeding Disorders Registry: A Two-year Update
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
![Progress Update on the Development of Etranacogene Dezaparvovec (AMT-061) in Severe or Moderately Severe Hemophilia B](/sites/default/files/styles/research_image/public/research/icons_clinical_research.png?itok=YXjrvzh4)
Progress Update on the Development of Etranacogene Dezaparvovec (AMT-061) in Severe or Moderately Severe Hemophilia B
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
![Anti-Gravity Treadmill Use in an Adult with Severe Hemophilic Arthropathy: A Case Report.](/sites/default/files/styles/research_image/public/research/icons_orthopedic_physicaltherapy.png?itok=vd-sKPHn)
Anti-Gravity Treadmill Use in an Adult with Severe Hemophilic Arthropathy: A Case Report.
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Orthopedic and Physical Therapy
![An analysis of fatalities in persons with congenital hemophilia A (PwcHA) reported in the FDA Adverse Event Reporting System (FAERS) database](/sites/default/files/styles/research_image/public/research/icons_clinical_research.png?itok=YXjrvzh4)
An analysis of fatalities in persons with congenital hemophilia A (PwcHA) reported in the FDA Adverse Event Reporting System (FAERS) database
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
![Evaluating BIVV001, a New Class of Factor VIII Replacement Therapy: A Phase 3 Study (XTEND-1) Design](/sites/default/files/styles/research_image/public/research/icons_clinical_research.png?itok=YXjrvzh4)
Evaluating BIVV001, a New Class of Factor VIII Replacement Therapy: A Phase 3 Study (XTEND-1) Design
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
![Characteristics of persons with hemophilia A treated with emicizumab with or without factor VIII inhibitors](/sites/default/files/styles/research_image/public/research/icons_qualityoflife_outcomesresearch.png?itok=IC9BvVFq)
Characteristics of persons with hemophilia A treated with emicizumab with or without factor VIII inhibitors
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
![Non-severe hemophilia is not benign? - Insights from the PROBE Study](/sites/default/files/styles/research_image/public/research/icons_qualityoflife_outcomesresearch.png?itok=IC9BvVFq)
Non-severe hemophilia is not benign? - Insights from the PROBE Study
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
![Redefining Treatment Satisfaction and Its Impact on Treatment Adherence and Value for Persons with Hemophilia: Findings from the HemACTIVE Study](/sites/default/files/styles/research_image/public/research/icons_qualityoflife_outcomesresearch.png?itok=IC9BvVFq)
Redefining Treatment Satisfaction and Its Impact on Treatment Adherence and Value for Persons with Hemophilia: Findings from the HemACTIVE Study
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
![Fear of pain in people with hemophilia and their families – a pilot study](/sites/default/files/styles/research_image/public/research/icons_psychosocial_issues.png?itok=O5IZr35m)
Fear of pain in people with hemophilia and their families – a pilot study
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Psychosocial Issues
![The Moti-VIII Study – Factors for Empowering Mobility and Well-being in Hemophilia A](/sites/default/files/styles/research_image/public/research/icons_qualityoflife_outcomesresearch.png?itok=IC9BvVFq)
The Moti-VIII Study – Factors for Empowering Mobility and Well-being in Hemophilia A
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
![A US payer database algorithm to identify clinical profiles of hemophilia B for burden of illness assessment](/sites/default/files/styles/research_image/public/research/icons_qualityoflife_outcomesresearch.png?itok=IC9BvVFq)
A US payer database algorithm to identify clinical profiles of hemophilia B for burden of illness assessment
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
![Behavior and cognition in children and young adults with hemophilia A or B: an update on developmental outcome](/sites/default/files/styles/research_image/public/research/icons_clinical_research.png?itok=YXjrvzh4)
Behavior and cognition in children and young adults with hemophilia A or B: an update on developmental outcome
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
![Incidence and Prevalence of Diagnosed and Undiagnosed Hemophilia A and Hemophilia B in the USA](/sites/default/files/styles/research_image/public/research/icons_qualityoflife_outcomesresearch.png?itok=IC9BvVFq)
Incidence and Prevalence of Diagnosed and Undiagnosed Hemophilia A and Hemophilia B in the USA
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
![A Review of Current Patient Reported Outcome Measures Used to Assess Mental Health in People with Hemophilia](/sites/default/files/styles/research_image/public/research/icons_qualityoflife_outcomesresearch.png?itok=IC9BvVFq)
A Review of Current Patient Reported Outcome Measures Used to Assess Mental Health in People with Hemophilia
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
![Supporting patient voice to inform healthcare decision-making: a discrete choice experiment on disability paradox in hemophilia](/sites/default/files/styles/research_image/public/research/icons_qualityoflife_outcomesresearch.png?itok=IC9BvVFq)
Supporting patient voice to inform healthcare decision-making: a discrete choice experiment on disability paradox in hemophilia
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
![Optimizing language to increase understanding, improve communication, and manage expectations around gene therapy for hemophilia: a qualitative study](/sites/default/files/styles/research_image/public/research/icons_psychosocial_issues.png?itok=O5IZr35m)
Optimizing language to increase understanding, improve communication, and manage expectations around gene therapy for hemophilia: a qualitative study
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Psychosocial Issues
![An ECHO’d Practice: Utilizing Tele-Mentoring for Enhanced Data Quality Across One Hemophilia Treatment Center Region](/sites/default/files/styles/research_image/public/research/icons_collaboration_teammodels.png?itok=hUaU9zXS)
An ECHO’d Practice: Utilizing Tele-Mentoring for Enhanced Data Quality Across One Hemophilia Treatment Center Region
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models
![Characterization and management of patients with mild or moderate hereditary factor X deficiency: a retrospective chart review](/sites/default/files/styles/research_image/public/research/icons_clinical_research.png?itok=YXjrvzh4)
Characterization and management of patients with mild or moderate hereditary factor X deficiency: a retrospective chart review
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
![A single administration of AAV5-hFIX in newborn, juvenile and adult mice leads to stable hFIX expression up to 18 months after dosing](/sites/default/files/styles/research_image/public/research/icons_biomedical_coagulationresearch.png?itok=8MKJu8kK)
A single administration of AAV5-hFIX in newborn, juvenile and adult mice leads to stable hFIX expression up to 18 months after dosing
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Biomedical/Coagulation Research