Research Presented at Our Conference | National Bleeding Disorders Foundation

Assessment of Current Clinical Practices in Integrating Treatment Guidelines for Hemophilia

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Inhibitors

RESEARCHERS:

Susan Gitzinger, Neil Frick, Haleh Kadkhoda, Emily Van Laar, Charlotte Warren, Michelle Witkop

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

RESEARCHERS:

Kun Yang, Brieana Cox-Buckley, Beth Schneider, Eric Peacock, Beth Luce

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

RESEARCHERS:

Cynthia Nichols, Angela Lambing, James Munn, Terry Anderson, Bartholomew Tortella, Michelle Witkop

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

RESEARCHERS:

Mimi Lou, Megan Ullman, Judith Baker, Marion Koerper, Brenda Riske, Joanne Wu, Randall Curtis, Michael Nichol

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

RESEARCHERS:

Susan Lattimor, Chere Chapman, Sherri Fay, Elizabeth Schwartz, Jimena Goldstine

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

RESEARCHERS:

Diane J. Aschman, Val Bias, Barbara A. Konkle, Jaime Morales, Glenn F. Pierce, Sarah Ruuska, Marion A. Koerper

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

RESEARCHERS:

Christopher E. Walsh, Annette von Drygalski, Jordan J. Feld, Graham R. Foster, K. Rajender Reddy, Catherine Stedman, Kimberly Workowski, Nika Sajed, Frida Abramov, Gerald Crans, Robert H. Hyland, Luisa M. Stamm, Diana M. Brainard, John G. McHutchison, Gayle P. Balba, Edward J. Gane, Ira M. Jacobson

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

RESEARCHERS:

Steven W Pipe, K John Pasi, Pencho Georgiev, Tim Mant, Michael Desmond Creagh, Toshko Lissitchkov, David Bevan, Steve Austin, Charles R Hay, Inga Hegemann, Rashid Kazmi, Pratima Chowdary, Savita Rangarajan, Chang-Heok Soh, Amy Monpara, Huy Van Nguyen, Kate Madigan, Margaret V. Ragni

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

RESEARCHERS:

Jamie O'Hara, Mark Skinner, Ashlie Elnoursi, Neil Frick

A Study of Ethical Issues in the Bleeding Disorders Community (BDC)

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Law/Ethics/Health Policy

RESEARCHERS:

Sabrina Farina, Sue duTreil, Madeline Cantini

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

RESEARCHERS:

Grace Hernandez, Kimberly Baumann, Susan Knight, Heidi Purrington, Marc Gilgannon, McKenzie Karelus, Jennifer Newman, Patricia Tobase, Dan Basoff, Sheba Mathew, David L. Cooper

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

RESEARCHERS:

Anita Avery, Diane MacDonald, Renuka Gera, Aghiad Chamdin, Ajovi Scott-Emuakpor, Laura Carlson, Lee Ann Scepka, Roshni Kulkarni

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

RESEARCHERS:

Susan Cutter, Christine Guelcher, Susan Hunter, Dawn Rotellini, Spencer Dunn, Natalia Holot, David L. Cooper

Adherence influences annualized bleeding rate during prophylaxis with turoctocog alfa: results from the guardian™1 trial

AWARDED/PRESENTED: 2015

GRANT/PROGRAM:

Bleeding Disorders Conference

Biomedical/Coagulation Research

RESEARCHERS:

Susan Lattimore, Tracy Peters, Nikola Tripkovic, David Ungar

Hospitalization for Acute Bleeding Events among Individuals with von Willebrand Disease (VWD) in the United States

AWARDED/PRESENTED: 2015

GRANT/PROGRAM:

Bleeding Disorders Conference

Biomedical/Coagulation Research

RESEARCHERS:

Alexandra Khachatryan, Diane Ito

BAY 81-8973: Pharmacokinetic Parameters in Adolescents, Adults, and Children With Severe Hemophilia A

AWARDED/PRESENTED: 2015

GRANT/PROGRAM:

Bleeding Disorders Conference

New Products

RESEARCHERS:

Anita Shah, Heinz Delesen, Thomas J. Humphries

A Novel Anti-Tissue Factor Pathway Inhibitor Antibody, BAY 1093884, Restores Hemostasis in Induced Hemophilia A Rabbits With Reduced Thrombogenic Potential

AWARDED/PRESENTED: 2015

GRANT/PROGRAM:

Bleeding Disorders Conference

Biomedical/Coagulation Research

RESEARCHERS:

Maria Koellnberger, Axel Trabandt, Derek Sim, Volker Laux

Prevalence of high BMI in school age children with hemophilia

AWARDED/PRESENTED: 2015

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Ellen White, Alice J Cohen, Melinda Inzani

Initial Observations From the Pain, Functional Impairment, and Quality of Life (P-FiQ) Study: Patient-Reported Outcome Assessments in US Adults With Hemophilia

AWARDED/PRESENTED: 2015

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Tyler Buckner, Michael Wang, Michael Recht, Kim Baumann, Michelle Witkop, Stacie Akins, Anne Neff, Sharon Funk, Grace Hernandez, Diane Nugent, Christine Kempton, Doris Quon, David Cooper

Impact of FVIII CRM-positive status on the immunogenicity of FVIII in the hemophilia A mouse model

AWARDED/PRESENTED: 2015

GRANT/PROGRAM:

Bleeding Disorders Conference

Biomedical/Coagulation Research

RESEARCHERS:

Jasmine Ito, Rylee Mercer, Brittany Chao, Michael Lenardo, John Healey, Hunter Baldwin, Shannon Meeks