NBDF showcases a wide array of findings from the latest in bleeding disorders research at our annual Bleeding Disorders Conference.
A retrospective chart review to assess clinical characteristics of women and girls with factor VIII and IX deficiency
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Women's Research
Evaluation of Joint Bleeds Using Portable Ultrasound and Its Impact on Treatment of Persons With Hemophilia in a Resource Limited Setting
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Orthopedic and Physical Therapy
A Unique Combination of Severe Congenital Factor XIII Deficiency and Type 2M Von Willebrand Disease – A Case Report
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Biomedical/Coagulation Research
Parents Empowering Parents (PEP) Community Survey: How does the community want to stay engaged, communicate, and receive information?
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Psychosocial Issues
Bleeding types and treatments in patients with von Willebrand disease before and after diagnosis
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
HemoFOCUS Screener for Inattention, Hyperactivity and Impulsivity: A Quality Improvement Intervention for Children with Severe Hemophilia
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Psychosocial Issues
Development of a plasminogen activator 1 (PAI-1) variant to modulate bleeding
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Biomedical/Coagulation Research
Clinical experience with BIVV001, the first investigational factor VIII (FVIII) therapy to break through the von Willebrand factor (VWF) ceiling in hemophilia A
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Using Photovoice with the Bleeding Disorder Population: A Pilot Project
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Peer Support/Outreach/Integration Models
Three-year efficacy and safety results from a phase 1/2 clinical study of AAV5-hFVIII-SQ gene therapy (valoctocogene roxaparvovec) for severe hemophilia A (BMN 270-201 study)
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Identification of Orthopedic and Genetic Needs Reported by Persons with Type 3/Severe Von Willebrand Disease
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Peer Support/Outreach/Integration Models
Modeling of Daily Administration of N8-GP (ESPEROCT®) vs Standard Half-life FVIII for Patients With Hemophilia A Participating in Sports Activities
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
An evaluation of health utility and quality-of-life in hemophilia: a systematic literature review
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
Online CME as a Tool to Increase Clinicians’ Knowledge of Clinical Trial Data for Gene Therapy in Hemophilia
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Increasing Medical Alert Devices (MAD) Compliance in School Age Children with Hemophilia: A Quality Improvement Project
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
A multidisciplinary approach to the successful transition of a complex patient with severe hemophilia A with inhibitor to Emicizumab (Hemlibra®): A Case Study
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models
The WFH World Bleeding Disorders Registry – 16-month update
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
A Retrospective Study Evaluating Immune Tolerance Induction (ITI) with a Plasma-derived Factor VIII for Patients with Hemophilia A and High Titer Inhibitor
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Inhibitors
Data is the new currency: The World Bleeding Disorders Registry Data Quality Accreditation Program
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
NHF’s State Advocacy and the Bleeding Disorders Community
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Law/Ethics/Health Policy