Research Presented at Our Conference | National Bleeding Disorders Foundation

Qualitative findings from bleeding disorders camp

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Psychosocial Issues

RESEARCHERS:

Sunnye Mayes, Osman Khan

Hereditary factor X (FX) deficiency in women and girls: treatment with a high purity plasma-derived factor X concentrate

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Roshni Kulkarni, Andra James, Miranda Norton, Amy Shapiro

Management of Hemophilia Carriers Around The Time of Their Delivery: Phenotypic Variation Requiring Customization of Management

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Women's Research

RESEARCHERS:

Marian Girgis, Philip Kuriakose, Laura Gusba

Centralized Inhibitor Testing in the United States: Laboratory Methods Used for the Community Counts Registry for Bleeding Disorders Surveillance

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Inhibitors

RESEARCHERS:

Amanda B. Payne, Dorothy Ellingsen, Jennifer Driggers, Brian Boylan, Fiona Bethea, Vanessa R. Byams, J. Michael Soucie, Connie H. Miller, Christopher J. Bean

Chronicles of Caring: Nursing Stories from the Heart of Hemophilia

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Angela Lambing, Jessica Walker, Jennifer Harris, Judith Kauffman, Joan Osip, Linda Peacock

Real-World Pharmacy Dispensation and Expenditures Associated with Standard and Extended Half-Life Recombinant Factor VIII Products in Hemophilia A

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

New Products

RESEARCHERS:

Patrick F. Fogarty, José Alvir, Amit Chhabra, Dean Spurden, Margaret McDonald, Bartholomew J. Tortella, Andreas M. Pleil

Factors influencing uptake of evaluation among hemophilia carriers and potential carriers

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Women's Research

RESEARCHERS:

Elizabeth Parks, Lauren Lichten, Michelle Alabek

Real-World Specialty Pharmacy Dispensation and Expenditures Associated with Prophylactic Regimens Using Standard and Extended Half-Life Recombinant Factor IX Products in Severe Hemophilia B

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

New Products

RESEARCHERS:

Patrick F. Fogarty, José Alvir, Amit Chhabra, Dean Spurden, Margaret McDonald, Bartholomew J. Tortella, Andreas M. Pleil

Patient Reported Outcomes, Burdens and Experiences (PROBE) Study Data Visualization and Analysis

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Alexandra Pastarnak, Randall Curtis, Neil Frick, Alfonso Iorio, Michael Nichol, Declan Noone, Brian O'Mahony, David Page, Jeffrey Stonebraker, Mark Skinner

The WFH Annual Global Survey: Gender Distribution

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Women's Research

RESEARCHERS:

Christine Herr, Mark Brooker, Donna Coffin

My Life Our Future Genotyping Days: On the Road Again to New Horizons

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Collaboration/Team Models

RESEARCHERS:

Elizabeth Varga, Linda Casto

Lessons Learned in the Assessment of Pain in US Adults With Hemophilia in the Pain, Functional Impairment, and Quality of Life (P-FiQ) Study: Importance of More Formalized Discussions Around Pain in the Comprehensive Care Setting

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Doris Quon, Michelle Witkop, Tyler Buckner, Michael Recht, Craig Kessler, Katharine Batt, Kimberly Baumann, David Cooper, Christine Kempton

Characterization of Women and Girls with Hemophilia Treated in the US from A Claims Database

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Women's Research

RESEARCHERS:

Jun Su, Nanxin Li, Deborah Testa, Brieana Cox-Buckley, Nisha Jain

Prevalence of gross motor delays in boys with hemophilia ages 4-14: single site study

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Orthopedic and Physical Therapy

RESEARCHERS:

Grace Hernandez, Michael Kunicki

Verification of Effective Zika Virus Reduction by Production Steps Used in theManufacture of Plasma-Derived Medicinal Products

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Biomedical/Coagulation Research

RESEARCHERS:

Nathan Roth, Wolfram Schafer, Birgit Popp, Martin Stucki, Randel Fang, Henry Mead

A Cumulative Review on Four Decades of Thrombo-Embolic Events Reported with the Use of Activated Prothrombin Complex Concentrate (APCC) in Congenital Haemophilia

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Inhibitors

RESEARCHERS:

Roberto Crea, Aaron Novack, Sandra Raff, Naghmana Bajwa, Alessandro Gringeri

PROTECT VIII: Can Eligibility for Less-Frequent Prophylaxis Dosing Regimens Be Predicted by Patient Characteristics?

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Johannes Oldenburg, Lisa A. Michaels, Kapil Saxena, Maria Wang, Olubunmi Afonja

Efficacy, safety and pharmacokinetics of once-weekly prophylactic emicizumab (ACE910) in pediatric persons (<12 years) with hemophilia A with inhibitors: interim analysis of single-arm, multicenter, open-label, phase 3 study (HAVEN 2)

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Guy Young, Johannes Oldenburg, Ri Liesner, Victor Jiménez-Yuste, Maria Elisa Mancuso, Tiffany Chang, Marianne Uguen, Christophe Dhalluin, Christophe Schmitt, Sabine Fuerst-Recktenwald, Midori Shima, Rebecca Kruse-Jarres