NBDF showcases a wide array of findings from the latest in bleeding disorders research at our annual Bleeding Disorders Conference.
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
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Psychosocial Issues
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
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
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
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
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
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
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
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
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
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Biomedical/Coagulation Research
Treatments and Clinical Outcomes of Bleeding Related to Pregnancy, Surgery, or Spontaneous or Traumatic Bleeds in Women and Girls With Factor VIII and IX Deficiency: Results From a Retrospective Chart Review
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Women's Research
Final Results of PUPs A-LONG Study: Evaluating Safety and Efficacy of rFVIIIFc in Previously Untreated Patients With Hemophilia A
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
A systematic review of mortality statistics and causes of death in people with congenital hemophilia A (PwcHA)
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Summary of thrombotic or thrombotic microangiopathy events in persons with hemophilia A taking emicizumab
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Assessing and Responding to the Oral Health Care Needs of Adults in a Bleeding Disorders Population
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
Longitudinal trends of patient-focused programs in the bleeding disorders community from 2013-20: a retrospective analysis of Hemophilia Alliance Foundation grants
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Peer Support/Outreach/Integration Models
Unmet Needs in Women with Severe Von Willebrand Disease
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Women's Research
Intra-individual across-study comparison of the pharmacokinetics of rFVIII-FS, BAY 81-8973 and BAY 94-9027 in patients with severe hemophilia A
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials