Research Presented at Our Conference

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

Pharmacokinetics and Prophylaxis Regimens and Relationship to Bleed Outcomes in Patients With Severe Hemophilia A Treated with BAY 81-8973

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Biomedical/Coagulation Research

RESEARCHERS:

Gautam Sajeev, Rajeev Ayyagari, Anita Shah, Yao Wang, Nikki Church, Annie Guérin, Olubunmi Afonja

Management of Hemophilia B in US Women and Its Impact on Education, Employment, and Activities: 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:

Mary Jane Frey, Skye Peltier, Don Molter, Susan Cutter, Kimberly Baumann, Grace Hernandez, Kimberly Haugstad, Michelle Rice, Robert Sidonio, Natalia Holot, David L. Cooper

Updated results from a dose-escalation study in adults with severe or moderate-severe hemophilia B treated with AMT-060 (AAV5-hFIX) gene therapy: up to 1.5 years follow-up

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Wolfgang Miesbach, Karina Meijer, Michel Coppens, Peter Kampmann, Robert Klamroth, Roger Schutgens, Giancarlo Castaman, Erhard Seifried, Joachim Schwaeble, Halvard Bonig, Christian Meyer, Federica Cattaneo, Eileen Sawyer, Frank Leebeek

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

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Michelle Witkop, Grace Hernandez, Michael Recht, Michael Wang, Kimberly Baumann, David Cooper, Christine Kempton

A Feasibility and Usability Study of a Nursing Orchestrated, Customized 3 Dimensional Virtual Reality Environment in Children with Hemophilia Undergoing Routine Intravenous Procedures

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Charmaine Biega, Jeremy Patterson, Alice Grishchenko, Juan Lima, Rob Strouse, Pam Widener, Amy Dunn

Estimating the prevalence of symptomatic, undiagnosed von Willebrand disease: analysis of medical insurance claims data

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Robert Sidonio, Ayesha Zia, Dana Fallaize

Ethics of Compensated Plasma Donation

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Law/Ethics/Health Policy

RESEARCHERS:

James Crone, Mark Skinner

Efficacy, safety and pharmacokinetics of emicizumab (ACE910) prophylaxis in persons with hemophilia A with inhibitors: randomized, multicenter, open-label, phase 3 study (HAVEN 1)

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Johannes Oldenburg, Johnny Mahlangu, Benjamin Kim, Christophe Schmitt, Michael Callaghan, Guy Young, Elena Santagostino, Rebecca Kruse-Jarres, Claude Negrier, Craig Kessler, Nancy Valente, Elina Asikanius, Gallia Levy, Jerzy Windyga, Midori Shima

Depression levels in patients with Hemophilia and von Willebrand

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Psychosocial Issues

RESEARCHERS:

Ana Paola Abreu Bastar, Valeria Escobar Ruiz, María Fernanda Domínguez Ballesteros, Leydi Lizbhet Morales de la Cruz, María Laura Giselle Torres Chablé

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