NBDF showcases a wide array of findings from the latest in bleeding disorders research at our annual Bleeding Disorders Conference.

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

The 2020 World Federation of Hemophilia Guidelines for the Management of Hemophilia
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models

Adding the patient's voice to a hemophilia-specific goal menu to facilitate Goal Attainment Scaling: a qualitative study
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research

Continuous infusion of B domain-truncated recombinant factor VIII, turoctocog alfa, for an acute moderate bleeding episode in hemophilia A: a first case report
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
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