Research Presented at Our Conference | National Bleeding Disorders Foundation

Comorbidities among Adults with Hemophilia: Hemophilia Utilization Group Studies (HUGS V)

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research

RESEARCHERS:

Mimi Lou, Joanne Wu, Megan Ullman, Marion Koerper, Jiat Ling Poon, Xiaoli Niu, Barbara A. Konkle, Roshni Kulkarni, Randall Curtis, Michael Nichol

Dosing Flexibility in Prophylaxis Regimens With Bayer’s Sucrose-Formulated Recombinant Factor VIII: Experience From Postmarketing Surveillance Studies

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research

RESEARCHERS:

Thomas J. Humphries, Stephan Rauchensteiner, Claudia Tückmantel, Alexander Pieper, Monika Maas Enriquez, Prasad Mathew

Production and Characterization of BAX 855, PEGylated rFVIII with Extended Half-Life

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Biomedical/Coagulation Research

RESEARCHERS:

Jürgen Siekmann, Martin Purtscher, Oliver Zöchling, Artur Mitterer, Mary Bossard, Gayle Philips, Martin Kaliwoda, Michael Graninger, Peter Matthiessen, Gerald Schrenk, Herbert Gritsch, Hanspeter Rottensteiner, Friedrich Scheiflinger, Peter L Turecek

A Prospective Case-Control Study of Bleeding Phenotype in Hemophilia A Carriers

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Women's Research

RESEARCHERS:

Allison Paroskie, Michael DeBaun, Robert Sidonio

A Study Evaluating the Impact of myCubixx, an Innovative Factor Inventory Management and Storage System with Selected Outcomes on People with Hemophilia A

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Available Clinical Studies

RESEARCHERS:

Josh Epstein, Diane Ito, Sharon Richardson

Don’t Push Your Luck! Educational Board (not Bored) Game for Families Living with Hemophilia

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Psychosocial Issues

RESEARCHERS:

Andrea Kennedy, Brenda Riske, Lisa Semple, Kerri Alderson, Vanessa Bouskill, Janice Karasevich, Sheri van Gunst

Gingival Bleeding and Oral Hygiene in Women with von Willebrand Disease

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Women's Research

RESEARCHERS:

Stefanie Marx, Jill Bashutski, Karen Ridley, Mark Snyder, L. Susan Taichman

Home infusion/specialty pharmacy inhibitor management program leads to patient/provider collaboration to facilitate enhanced program and patient outcomes

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Collaboration/Team Models

RESEARCHERS:

Joan Couden, Kirstin Schmidt, Tami Bullock, Elizabeth Hanlon, Donna Haffler

The Impact of Reduced Treatment Frequency: Qualitative Evaluation of Adherence and Outcomes in Chronic Disease Management

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Psychosocial Issues

RESEARCHERS:

Elizabeth Schwartz, Josh Epstein, Bruce Ewenstein

The Medical Home Neighbor: The Intermountain Hemophilia and Thrombosis Center’s Experience with Quality Improvement via the Children’s Health Improvement Collaborative Medical Home Demonstration Project in Utah

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Collaboration/Team Models

RESEARCHERS:

Kate Colbath, Heidi Lane, Chuck Norlin

New insights from modeling FVIII Kinetics of Native vs. Extended Half-life FVIII Products - Comparing FVIII Coverage under Various Dosing Scenarios

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Available Clinical Studies

RESEARCHERS:

Armin J. Reininger, Joshua D. Epstein, Katharina N. Steinitz, Alessandro Gringeri

Systematic review of clinical trials results assessing health-related quality of life in hemophilia patients receiving prophylaxis

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Available Clinical Studies

RESEARCHERS:

Abiola Oladapo, Joshua D. Epstein, Erin Williams, Diane Ito, Alessandro Gringeri, Leonard Valentino

Real World Utilization and Cost of aPCC versus rFVIIa Among Hemophilia Patients with Inhibitors in the US

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Available Clinical Studies

RESEARCHERS:

Abiola Oladapo, Yan Xiong, Joshua D. Epstein

An Initiative to Implement Quality Improvement Measures for Hemophilia Treatment Centers

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Collaboration/Team Models

RESEARCHERS:

Natalie Duncan, Christopher Roberson, Alice Lail, Sharyne Donfield, Amy Shapiro

Treatment, Outcomes, and Access to Care Among Young Adults (ages 18-30) With Hemophilia in the US Hemophilia Experiences, Results and Opportunities (HERO) Study

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Psychosocial Issues

RESEARCHERS:

Angela Lambing, Chris Guelcher, Michelle Witkop, Angela Forsyth, Sarah Hawk, Neil Frick, Randall Curtis, Laureen Kelley, Michelle Rice, David Cooper

Mobilizing Patients Towards Positive Health Management Through Motivational Interviewing

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Collaboration/Team Models

RESEARCHERS:

Mary Jane Frey, Michelle Witkop, Susan Zappa, Chris Guelcher, Sonia Nasr

A Comparison of US Prophylaxis Rates Shows Lower Prescribing for Severe Hemophilia B Patients than Severe Hemophilia A Patients

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research

RESEARCHERS:

Alexandra Khachatryan, Yan Xiong, Josh Epstein

Global Assessment of Knowledge and Practices in the Diagnosis, Classification, and Management of Hemophilia among Pediatric Providers

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Peer Support/Outreach/Integration Models

RESEARCHERS:

ES Van Laar, C Warren, J Desai, N Frick, PF Fogarty

Haemophilia A Carriers Experience Reduced Health-Related Quality of Life

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Women's Research

RESEARCHERS:

Leslie Gilbert, Allison Paroskie, David Gailani, Michael Debaun, Robert Sidonio, Jr.

Joint Outcomes by Magnetic Resonance Imaging After Treatment With Bayer’s Sucrose-Formulated Recombinant Factor VIII in the SPINART Study: Results at the 3-year Evaluation Timepoint

AWARDED/PRESENTED: 2014

GRANT/PROGRAM:

Bleeding Disorders Conference

Orthopedic and Physical Therapy

RESEARCHERS:

Walter Hong, David Raunig, Charles Peterfy, Michael Werk, Marilyn J. Manco-Johnson, Bjorn Lundin