Research Presented at Our Conference | National Bleeding Disorders Foundation

Assessing the Availability and Use of Resources to Support Youth with Hemophilia, their Families and Care Teams during Transition to Adult Health Care

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Collaboration/Team Models

RESEARCHERS:

Sarah C. Keithly, Chioma Uzoigwe, Kelly P. McCarrier, Mona L. Martin, Julia R. Correll, Juliana Setyawan

Survey Finds Interest in Bleeding Disorder Social Work Specialty Credentialing

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Psychosocial Issues

RESEARCHERS:

Sabrina Farina, Natalie Duncan, Madeline Cantini

Physician practice patterns in the US show significant variation in how PK parameters are currently used to personalize care for US hemophilia A patients

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Angela Forsyth, Josh Epstein, Tim Brown, Alessandro Gringeri, Elizabeth Schwartz, Jason Booth, Jimena Goldstine

Attitudes and Perspectives on Ankle Function in People with Hemophilia: A Qualitative Study

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Orthopedic and Physical Therapy

RESEARCHERS:

Kate Stribling, Jamie Beckwith, David Oleson, Nancy Durben, Michael Recht

Impact of targeted education on obesity in children with hemophilia-a single HTC quality project

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Karolina Lieponis, Erin Gorman, Elizabeth Kern, Nicole Hroma, Faith Gately, Pauline Hess, Kristin Clemenz, Alexandra Batts, Susan Gamerman, Rukhmi Bhat

BAY 94-9027, a Site-Specifically PEGylated Recombinant Factor VIII: Preliminary Results From a Global Comparative Laboratory Field Study

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

New Products

RESEARCHERS:

Nikki Church, Lilley Leong, Yvonne Katterle, Yadagiri Rao Danda, Hannes-Friedrich Ulbrich, Iris Noerenberg, Stefan Bruns, Lisa A. Michaels

The WFH Launches World Bleeding Disorders Registry to Expand Knowledge Base Worldwide

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Glenn F. Pierce, Alfonso Iorio, Jamie O'Hara, Saliou Diop, Rob Hollingsworth, Alok Srivastava, David Lillicrap, H. Marijke van den Berg, Christine Herr, Donna Coffin

Journey to Best Outcomes in Hemophilia Transition: Passage to Independence

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Collaboration/Team Models

RESEARCHERS:

Linda Casto, Amy Dunn, Pam Widener, Eric Wood, Laura Beemiller

Lessons Learned From the Assessment and Prevalence of Anxiety and Depression in US Adults With Hemophilia in the Pain, Functional Impairment, and Quality of Life (P-FiQ) Study: Importance of Routine Screening and Comprehensive Approaches to Management

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Michael Recht, Katharine Batt, Michelle Witkop, David Cooper, Christine Kempton

Optimal dosing strategies evaluated using a model of the terminal half-life curves for 11 rFVIII products

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Peer Support/Outreach/Integration Models

RESEARCHERS:

Robert Amand

Assessment of numeracy, genetic knowledge and perceptions of genetic testing in carriers of Hemophilia A and B

AWARDED/PRESENTED: 2017

GRANT/PROGRAM:

Bleeding Disorders Conference

Women's Research

RESEARCHERS:

Bojana Pencheva, Robert Sidonio Jr.

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