Research Presented at Our Conference | National Bleeding Disorders Foundation

Von Willebrand Disease: An international Survey to Inform Priorities for New Guidelines

AWARDED/PRESENTED: 2019

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Mohammed Al-Khatib, Nathan Connell, Veronica Flood, Romina Brignardello-Petersen, Cary Clark, Jenny Castano, Ellen Riker, Fiona Robinson, Mark Skinner, Mohamad Kalot, Paula James, Reem Mustafa

Use of Return to Sport Testing for Prevention of Bleeding Episodes Following an Acute Injury in the Hemophilia Patient

AWARDED/PRESENTED: 2019

GRANT/PROGRAM:

Bleeding Disorders Conference

Orthopedic and Physical Therapy

RESEARCHERS:

Rachel Horton

von Willebrand Factor in Pregnancy (VIP) Study: A Multicenter Study of Wilate Use in von Willebrand Disease for Childbirth

AWARDED/PRESENTED: 2019

GRANT/PROGRAM:

Bleeding Disorders Conference

Women's Research

RESEARCHERS:

Jill Johnsen, Sarah Ruuska, Barbara Konkle, Peter Kouides

Depression in hemophilia and von Willebrand using the Beck Depression Inventory

AWARDED/PRESENTED: 2019

GRANT/PROGRAM:

Bleeding Disorders Conference

Psychosocial Issues

RESEARCHERS:

Ana Paola Abreu Bastar, Ana Laura Abreu Bastar, Valeria Escobar Ruiz

Gender Differences in Parenting Stress and Social Support Among Hemophilia Families

AWARDED/PRESENTED: 2019

GRANT/PROGRAM:

Bleeding Disorders Conference

Psychosocial Issues

RESEARCHERS:

Carletha Gates

Optimizing signal strength and suppressive potential of FVIII specific CAR Tregs for tolerance induction in a murine model of hemophilia A

AWARDED/PRESENTED: 2019

GRANT/PROGRAM:

Bleeding Disorders Conference

Biomedical/Coagulation Research

RESEARCHERS:

Roland W Herzog, Todd M Brusko, Jyoti Rana, Moanaro Biswas

The impact of face-to-face social work meetings in bleeding disorder care

AWARDED/PRESENTED: 2019

GRANT/PROGRAM:

Bleeding Disorders Conference

Psychosocial Issues

RESEARCHERS:

Jennifer King

No evidence of germline transmission of vector DNA following intravenous administration of AAV5-hFIX to male mice

AWARDED/PRESENTED: 2019

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Martin de Haan, Eileen Sawyer, Liesbeth Heijink, Jaap Twisk, Lisa Spronck

The Effect of Bleeding Disorder Characteristics on Patient Perceived Challenges and Management Strategies

AWARDED/PRESENTED: 2019

GRANT/PROGRAM:

Bleeding Disorders Conference

Peer Support/Outreach/Integration Models

RESEARCHERS:

David Oleson

Clinical Study to Investigate the Efficacy and Safety of Wilate During Prophylaxis in Previously Treated Patients With Von Willebrand Disease (VWD)

AWARDED/PRESENTED: 2019

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

robert sidonio, bruce schwartz

Surgical Experience in Two Multicenter, Open-label Phase 3 Studies of Emicizumab in Persons with Hemophilia A with Inhibitors (HAVEN 1 and HAVEN 2)

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Tiffany Chang, Christophe Dhalluin, Guy Young, Johannes Oldenburg, Richard Ko, Liane Khoo, Michael Callaghan, Paul Solari, Rebecca Kruse-Jarres, Michael Recht, Ri Liesner, Stacy Croteau, Tadashi Matsushita, Benjamin Trzaskoma, Victor Yuste, Jin Xu

Use of platelet microcapsule hybrids loaded with factor VIII to treat hemophilia A mice

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Biomedical/Coagulation Research

RESEARCHERS:

Caroline Hansen, Hunter Baldwin, Shannon Meeks, Wilbur Lam

Giving men with vwd a voice

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Peer Support/Outreach/Integration Models

RESEARCHERS:

Felix Olaya, Kate Nammacher

Discrepant Hemophilia A: Single Institution Experience

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Ahmad Alhuniti, Anjali Sharathkumar, Karla Watkinson, Michelle Krantz, Sharathkumar Bhagavathi, Usha Perepu

Identification of Challenges and Coping Strategies in the Management of Bleeding Disorders, From the Patient Perspective

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Alysia Cox, Nancy Durben, Susan Lattimore, Mary O'Connell, David Oleson, Michael Recht

Patient Satisfaction with US Hemophilia Treatment Centers: National Trends 2017

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Judith Baker, Susan Lattimore, Merilee Ashton, Rick Shearer

HOPE-B: Study design of a Phase III trial of an investigational gene therapy AMT-061 in subjects with severe or moderately severe hemophilia B

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Frank W G Leebeek, Giancarlo Castaman, Susan Lattimore, Nigel S Key, Michael Recht, Steven Zelenkofske, Steven Pipe, Wolfgang Miesbach

rFVIIIFc for immune tolerance induction in severe hemophilia A subjects with inhibitors: a follow-up retrospective analysis

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Inhibitors

RESEARCHERS:

Amy Shapiro, Courtney Thornburg, Elisa Tsao, Janice Staber, Jennifer Dumont, Jing Feng, Ken Lieuw, Manuel Carcao, Mark Belletrutti, Nina Hwang, Nisha Jain, Sanjay Ahuja, Steven Pipe, Zahra Alkhateeb