Research Presented at Our Conference | National Bleeding Disorders Foundation

Effective Long-term Prophylaxis with BAY 94-9027 in Previously Treated Children: Interim Results of the PROTECT VIII Kids Extension Study

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Camila Linardi, Despina Tseneklidou-Stoeter, Gili Kenet, Kapil Saxena, MacGregor Steele, Tina Biss

PiggyBac mediated gene transfer for prevention of anti-factor VIII antibodies in hemophilia A

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Biomedical/Coagulation Research

RESEARCHERS:

Blake Johnson, Chandler Tinsman, Janice Staber, Molly Pollpeter

An update on cognitive and behavior function in children and young adults with hemophilia: a 25-year journey from the Hemophilia Growth and Development Study to the current eTHINK study

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Cathy Buranahirun, Christine Mrakotsky, Cara Misetic, David Cooper, Greta Wilkening, Kevin Shapiro, Karin Walsh, Madhvi Rajpurkar, Stacy Croteau, Susan Kearney

Real-world bleeding outcomes and adherence metrics among persons with hemophilia A and B receiving standard or extended half-life factor replacement products

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

New Products

RESEARCHERS:

Amit Chhabra, Bartholomew J. Tortella, Dean Spurden, Emily Rubinstein, José Alvir, Margaret McDonald, Patrick F. Fogarty

Patient perspectives on the value of reduced infusion frequency and longevity of protection for prophylactic treatment of hemophilia A

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Quality of Life/Outcomes Research

RESEARCHERS:

Adam Gator, Chris Marshall, Jane Wells, Parth Vashi, Sophia Kessabi, Theo Tritton

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

NHF’s State Based Advocacy Coalitions (SBAC) Program

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Law/Ethics/Health Policy

RESEARCHERS:

Brendan Hayes, Bill Robie, Nathan Schaefer

Effective Protection for >5 Years With BAY 94-9027 Prophylaxis: PROTECT VIII Extension Trial Interim Results

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Graeme Thomson, Maria Wang, Monika Maas Enriquez, Pål Andrè Holme, Prasad Mathew

Congenital afibrinogenemia: a case report of perioperative hematological management during difficult orthopedic surgery

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Tomas Simurda

PROTECT VIII Extension Trial Interim Data: Safety of >5 Years of Treatment With BAY 94-9027

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Clinical Research/Clinical Trials

RESEARCHERS:

Camila Linardi, Despina Tseneklidou-Stoeter, Heng Joo Ng, Mart T. Reding, Shadan Lalezari

Surveying Nurses’ Knowledge and Confidence of Discussing Oral Health with Patients with Bleeding Disorders

AWARDED/PRESENTED: 2018

GRANT/PROGRAM:

Bleeding Disorders Conference

Collaboration/Team Models

RESEARCHERS:

Stefanie VanDuine

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