NBDF showcases a wide array of findings from the latest in bleeding disorders research at our annual Bleeding Disorders Conference.
Assessing the Availability and Use of Resources to Support Youth with Hemophilia, their Families and Care Teams during Transition to Adult Health Care
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models
Survey Finds Interest in Bleeding Disorder Social Work Specialty Credentialing
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Psychosocial Issues
Physician practice patterns in the US show significant variation in how PK parameters are currently used to personalize care for US hemophilia A patients
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Attitudes and Perspectives on Ankle Function in People with Hemophilia: A Qualitative Study
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Orthopedic and Physical Therapy
Impact of targeted education on obesity in children with hemophilia-a single HTC quality project
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
BAY 94-9027, a Site-Specifically PEGylated Recombinant Factor VIII: Preliminary Results From a Global Comparative Laboratory Field Study
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
New Products
The WFH Launches World Bleeding Disorders Registry to Expand Knowledge Base Worldwide
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
Journey to Best Outcomes in Hemophilia Transition: Passage to Independence
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models
Lessons Learned From the Assessment and Prevalence of Anxiety and Depression in US Adults With Hemophilia in the Pain, Functional Impairment, and Quality of Life (P-FiQ) Study: Importance of Routine Screening and Comprehensive Approaches to Management
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
Optimal dosing strategies evaluated using a model of the terminal half-life curves for 11 rFVIII products
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Peer Support/Outreach/Integration Models
Assessment of numeracy, genetic knowledge and perceptions of genetic testing in carriers of Hemophilia A and B
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Women's Research
Assessment of Current Clinical Practices in Integrating Treatment Guidelines for Hemophilia
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Inhibitors
What Symptoms of Hemophilia Most Impact Quality of Life – A Quantitative Survey of People Living with or Caring for Someone with Hemophilia A
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
IMPACT QoL II - The relationship of depression and anxiety to control of chronic pain and adherence to clotting-factor treatment
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
Living with hemophilia B: examining quality of life and associated characteristics in the Hemophilia Utilization Group Studies (HUGS Vb) cohort
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
Patient and Clinician Experience of Using Goal Attainment Scaling for Hemophilia (GAS-Hēm), an Innovative Patient-Centered Outcome Measure
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
My Life, Our Future: Development of the World’s Largest Genetic Research Repository for Hemophilia
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Women's Research
An Integrated Safety and Efficacy Analysis of Sofosbuvir-Based Regimens in Patients with Hereditary Bleeding Disorders
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
Management of Bleed Events in the Phase 2 Study of Fitusiran, an Investigational RNAi Therapeutic Targeting Antithrombin for the Treatment of Hemophilia A and B with and Without Inhibitors
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
New Products
CHESS – Improving research and advocacy through an improved understanding of the economic and social burden of hemophilia
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research