Research Presented at Our Conference | National Bleeding Disorders Foundation

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

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