NHF showcases a wide array of findings from the latest in bleeding disorders research at our annual Bleeding Disorders Conference.

Summary of thrombotic or thrombotic microangiopathy events in persons with hemophilia A taking emicizumab

Summary of thrombotic or thrombotic microangiopathy events in persons with hemophilia A taking emicizumab

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
RESEARCHERS:
Kirsten Balogh, NP, MPH, Genentech, Inc.; Tiffany Chang, MD, MAS, Genentech, Inc.; Fabian Sanabria, MD, F. Hoffmann-La Roche Ltd; Katya Moreno, MD, F. Hoffmann-La Roche Ltd; Richard H. Ko, MD, Genentech, Inc.; Peter Kuebler, PharmD, Genentech, Inc.; Lucy Lee, PhD, Genentech, Inc.; Eunice Tzeng, PhD, Genentech, Inc.
Assessing and Responding to the Oral Health Care Needs of Adults in a Bleeding Disorders Population

Assessing and Responding to the Oral Health Care Needs of Adults in a Bleeding Disorders Population

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
RESEARCHERS:
Joanna Larson, FNP-C, University of Texas Health Science Center at Houston; Megan Ullman, MPH, University of Texas Health Science Center at Houston; Michael M. Chan, DDS, University of Texas Health Science Center at Houston; Miguel Escobar, MD, University of Texas Health Science Center at Houston
Longitudinal trends of patient-focused programs in the bleeding disorders community from 2013-20: a retrospective analysis of Hemophilia Alliance Foundation grants

Longitudinal trends of patient-focused programs in the bleeding disorders community from 2013-20: a retrospective analysis of Hemophilia Alliance Foundation grants

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Peer Support/Outreach/Integration Models
RESEARCHERS:
Amy Marquez, MS, Fairview Health Services; Anjali Sharathkumar, MBBS, MD, MS, University of Iowa; Audra Ames, PhD, Hemophilia Alliance Foundation; Brenda Riske, MS, MBA, MPA, Hemophilia Alliance Foundation; Crystal Sallans, LCSW, Texas Children’s Hematology Center; Donald Akers, JD, Hemophilia Alliance Foundation; Grant Hiura, MPH, Columbia University Irving Medical Center; Joseph Pugliese, BS, Hemophilia Alliance Foundation; Laurel Pennick, MSSW, LCSW, Arizona Hemophilia and Thrombosis Center; Michael Craciunoiu, EdM, National Hemophilia Foundation; Maria Manahan, MS, Hemophilia Alliance Foundation; Susan Karp, RN, MS, Hemophilia Alliance Foundation; Stephanie Raymond, BS, Cascade Hemophilia Consortium
Unmet Needs in Women with Severe Von Willebrand Disease

Unmet Needs in Women with Severe Von Willebrand Disease

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Women's Research
RESEARCHERS:
Beverly Schaefer, MD, WNY BloodCare, University at Buffalo, Roswell Park Cancer Institute; Jeanette Cesta, BS, VWD Connect Foundation; Shaveta Malik, MD, University at Buffalo, WNY BloodCare
The Impact of Novel Hemophilia Treatment Products on Inhibitor Testing for the Community Counts Registry for Bleeding Disorders Surveillance

The Impact of Novel Hemophilia Treatment Products on Inhibitor Testing for the Community Counts Registry for Bleeding Disorders Surveillance

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Inhibitors
RESEARCHERS:
Amanda B. Payne, PhD, MPH, Centers for Disease Control and Prevention; Connie H. Miller, PhD, Centers for Disease Control and Prevention; Christopher J. Bean, PhD, Centers for Disease Control and Prevention; Jennifer Driggers, BS, Centers for Disease Control and Prevention; Karon Abe, PhD, Centers for Disease Control and Prevention; Brian Boylan, MS, Centers for Disease Control and Prevention; Glenn P. Niemeyer, PhD, Centers for Disease Control and Prevention; Vanessa R. Byams, DrPH, MPH, Centers for Disease Control and Prevention
Utilization of Telehealth for Home Infusion Teaching and Support in the COVID Era

Utilization of Telehealth for Home Infusion Teaching and Support in the COVID Era

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Peer Support/Outreach/Integration Models
RESEARCHERS:
Amy Pegman, RN, University Hospitals Cleveland Medical Center/Rainbow Babies and Children's Hospital; Caitlin Tucker, RN,BSN, University Hospitals Cleveland Medical Center/Rainbow Babies and Children's Hospital; Ryan Summers, RN, BSN, University Hospitals Cleveland Medical Center/Rainbow Babies and Children's Hospital; Sanjay Ahuja, MD, MSc MBA, University Hospitals Cleveland Medical Center/Rainbow Babies and Children's Hospital; Susan Hunter, RN,BSN, University Hospitals Cleveland Medical Center/Rainbow Babies and Children's Hospital
A contemporary framework for understanding mortality in people with congenital hemophilia A (PwcHA)

A contemporary framework for understanding mortality in people with congenital hemophilia A (PwcHA)

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
RESEARCHERS:
Tiffany Chang, MD, MAS, Genentech, Inc.; Charles R.M. Hay, MbChB, MD, FRCP, FRCPath, UK National Haemophilia Database and Manchester Royal Infirmary; Fabian Sanabria, MD, F. Hoffmann-La Roche Ltd; Flora Peyvandi, MD, PhD, IRCCS Ca’ Granda Foundation, Ospedale Maggiore Policlinico; Glenn F. Pierce, MD, PhD, World Federation of Hemophilia; Johnny N. Mahlangu, BSc, MBBCh, University of the Witwatersrand and NHLS; Richard H. Ko, MD, MHS, MS, Genentech, Inc.; Peter Kuebler, PharmD, Genentech, Inc.; Rebecca Kruse-Jarres, MD, University of Washington and Washington Center for Bleeding Disorders, Bloodworks Northwest; Steven W. Pipe, MD, University of Michigan
The Need for Comprehensive Care for Persons with Chronic Platelet Disorders

The Need for Comprehensive Care for Persons with Chronic Platelet Disorders

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models
RESEARCHERS:
Chanel J Unzicker, RN, BSN, Bleeding and Clotting Disorders Institute; Kristin Ansteatt, FNP-BC, Bleeding and Clotting Disorders Institute; Marsha L Hurn, MSW, LSW, Bleeding and Clotting Disorders Institute; Michael D Tarantino, MD, Bleeding and Clotting Disorders Institute
Final Results of PUPs B-LONG Study: Evaluating Safety and Efficacy of rFIXFc in Previously Untreated Patients With Hemophilia B

Final Results of PUPs B-LONG Study: Evaluating Safety and Efficacy of rFIXFc in Previously Untreated Patients With Hemophilia B

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
RESEARCHERS:
Anna Klukowska, MD, MedIcal University of Warsaw; Antoine Rauch, MD, PhD, Lille University Hospital Center (CHU) Lille; Amy Shapiro, MD, Indiana Hemophilia and Thrombosis Center; Bent Winding, MD, Swedish Orphan Biovitrum AB; Deepthi Jayawardene, MD, Sanofi; Beatrice Nolan, MD, Our Lady's Children's Hospital; Julie Curtin, MBBS, PhD, The Children's Hospital at Westmead; Kathelijn Fischer, MD, PhD, University Medical Center Utrecht; Margaret Ragni, MD, MPH, University of Pittsburgh Medical Center; Michael Recht, MD, PhD, Oregon Health and Science University; Raina Liesner, MD, Great Ormond Street Hospital; Sriya Gunawardene, MD, Sanofi; Stacey Poloskey, MD, Sanofi
3 apps in 1: MyCBDR, myWAPPS and myPROBE

3 apps in 1: MyCBDR, myWAPPS and myPROBE

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models
RESEARCHERS:
David Page, Canadian Hemophilia Society; Chatree Chai-Adisaksopha, MD, Department of Medicine, McMaster University; Department of Internal Medicine, Chiang Mai University; Randall Curtis, MBA, Factor VIII Computing; Neil Frick, MS, National Hemophilia Foundation; Alfonso Iorio, MD Ph.D. FRCP, Department of Health Research Methods, Evidence, and Impact; McMaster-Bayer Endowed Research Chair in Clinical Epidemiology of Congenital bleeding Disorders; Department of Medicine, McMaster; Michael Nichol, Ph.D., University of Southern California, Sol Price School of Public Policy; Declan Noone, MEng, Health Decisions Consultants; European Haemophilia Consortium; Brian O'Mahony, Irish Haemophilia Society; Trinity College Dublin; Jeff Stonebraker, Ph.D., North Carolina State University, Poole College of Management; Federico Germini, MD, Department of Medicine, McMaster University; Department of Health Research Methods, Evidence, and Impact, McMaster University; Mark Skinner, JD, Institute for Policy Advancement Ltd.; McMaster University Department of Health Research Methods, Evidence, and Impact, McMaster University
Bone and joint health markers in persons with hemophilia A treated with emicizumab in the HAVEN 3 clinical trial

Bone and joint health markers in persons with hemophilia A treated with emicizumab in the HAVEN 3 clinical trial

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Clinical Research/Clinical Trials
RESEARCHERS:
Joanne I. Adamkewicz, PhD, Genentech, Inc.; Anna Kiialainen, PhD, F. Hoffmann-La Roche Ltd; Tiffany Chang, MD, MAS, Genentech, Inc.; Christine L. Kempton, MD, MSc, Emory University School of Medicine; Giancarlo Castaman, MD, Careggi University Hospital; Markus Niggli, PhD, F. Hoffmann-La Roche Ltd; Ido Paz-Priel, MD, Genentech, Inc.
On My Own, A Pilot Transition Program for Teens

On My Own, A Pilot Transition Program for Teens

AWARDED/PRESENTED: 2020
GRANT/PROGRAM:
Bleeding Disorders Conference
Collaboration/Team Models
RESEARCHERS:
Amanda Fridley, Pharm D, Cincinnati Children's Hospital Medical Center; Anna Worpenberg, MSW, LSW, Cincinnati Children's Hospital Medical Center; Helen Lamping, Associates, Tri-State Bleeding Disorder Foundation; Julie Doyle, BSN, RN, Cincinnati Children's Hospital Medical Center; Julie Hendrickson, BSN, RN, CPN, Cincinnati Children's Hospital Medical Center; Lisa Littner, MPH, MSW, LISW-S, CHES, Cincinnati Children's Hospital Medical Center; Mary Busam, Pharm D, Cincinnati Children's Hospital Medical Center; Molly Mays, MPT, Cincinnati Children's Hospital Medical Center; Shanna Korn, BA, Cincinnati Children's Hospital Medical Center