NBDF showcases a wide array of findings from the latest in bleeding disorders research at our annual Bleeding Disorders Conference.
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
New Products
Case Report of Surgical Management of a Hemophilia B Gene Transfer Clinical Trial Participant Following Etranacogene Dezaparvovec (AMT-061) Gene Therapy
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
The Impact of Novel Hemophilia Treatment Products on Inhibitor Testing for the Community Counts Registry for Bleeding Disorders Surveillance
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Inhibitors
Vector DNA clearance from bodily fluids in patients with severe or moderate-severe hemophilia B following systemic administration of AAV5-hFIX and AAV5-hFIX Padua
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Utilization of Telehealth for Home Infusion Teaching and Support in the COVID Era
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Peer Support/Outreach/Integration Models
A contemporary framework for understanding mortality in people with congenital hemophilia A (PwcHA)
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
The Need for Comprehensive Care for Persons with Chronic Platelet Disorders
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models
Final Results of PUPs B-LONG Study: Evaluating Safety and Efficacy of rFIXFc in Previously Untreated Patients With Hemophilia B
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
3 apps in 1: MyCBDR, myWAPPS and myPROBE
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models
Bone and joint health markers in persons with hemophilia A treated with emicizumab in the HAVEN 3 clinical trial
AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials