NBDF showcases a wide array of findings from the latest in bleeding disorders research at our annual Bleeding Disorders Conference.
A look from within: a needs assessment of educational support for the Rare Bleeding Disorders Community
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Peer Support/Outreach/Integration Models
Five-year safety and efficacy of N9-GP (REBINYN®) in previously treated children with hemophilia B in the ongoing paradigm 5 trial
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Satisfaction with Teen Transition Services at US Hemophilia Treatment Centers by Center – Variation by Pediatric and Lifespan Centers 2014 and 2017
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
The Positive Impact of CME on Healthcare Providers’ Knowledge of Gene Therapy Studies in Hemophilia
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Evaluation of Patient and Physician Reported Reasons for Switching FVIII Replacement Therapies Among Patients With Hemophilia A
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
A survey among patients with hemophilia and inhibitors seeking treatment in non-hemophilia treatment centers
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Inhibitors
World Federation of Hemophilia Annual Global Survey analysis of age distribution of patients with hemophilia
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
Short-term efficacy of recombinant porcine factor VIII in patients with acquired factor VIII inhibitors
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Inhibitors
Combining Data from Hemophilia Registries with the World Bleeding Disorders Registry: A Proof of Concept Study with the Czech National Haemophilia Programme Registry
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
Acute Lymphoblastic Leukemia in a Pediatric Patient with Hemophilia B: A Rare Clinical Challenge
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
New Products
Female Patients with Hemophilia A: A Claims-Linked Chart Review
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Women's Research
Physical Therapy and Extensions for Community Healthcare Outcomes (ECHO): Western States Hemophilia Regional Project
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Orthopedic and Physical Therapy
Women and girls with hemophilia: Gender-based differences in comprehensive care
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Women's Research
Behavioral Health and Substance Use Screening Practices among Hemophilia Treatment Centers
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Psychosocial Issues
Correcting Bleeding Disorders Using Blood Clotting Factors Produced in vivo by Encapsulated Engineered Allogeneic Human Cells
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Biomedical/Coagulation Research
Pain assessment and treatment in bleeding disorder care: The need for social work specific education
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Psychosocial Issues
AMT-061 (AAV5-Padua hFIX variant) an Enhanced Vector for Gene Transfer in Adults with Severe or Moderate-Severe Hemophilia B: Follow-up up to 9 Months in a Phase 2b trial
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Quality Improvement: An Initiative to Foster Mental Health Wellness among a Hemophilia Treatment Center Patient Population
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Psychosocial Issues
Baseline patient characteristics in ReITIrate: A prospective study of rescue ITI with recombinant factor VIII Fc fusion protein (rFVIIIFc) in patients who have failed previous ITI attempts
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Optimizing language for effective communication of gene therapy concepts: A qualitative study
AWARDED/PRESENTED: 2019
GRANT/PROGRAM:
Bleeding Disorders Conference
Peer Support/Outreach/Integration Models