NBDF showcases a wide array of findings from the latest in bleeding disorders research at our annual Bleeding Disorders Conference.
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
A Study of Ethical Issues in the Bleeding Disorders Community (BDC)
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Law/Ethics/Health Policy
Sports/Recreational Activity-Specific Range and Drivers of Risk in People With Hemophilia: Results of the Activity-Intensity-Risk (AIR) Survey and Consensus Meeting of US Physical Therapists
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Orthopedic and Physical Therapy
Addressing issues of women and girls with blood disorders (WGBD) through a collaborative obstetrics/gynecology, adult and pediatric hematology lifespan clinic: a pilot project
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models
Mild-Severe Hemophilia B Impacts Relationships for US Adults and Children With Hemophilia B and Their Families: Results From the Bridging Hemophilia B Experiences, Results, and Opportunities Into Solutions (B-HERO-S) Study
AWARDED/PRESENTED: 2017
GRANT/PROGRAM:
Bleeding Disorders Conference
Psychosocial Issues