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Journal of Blood Medicine Volume 12, 2021 - Issue
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Perspectives

Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders

Leonard A Valentino1 National Hemophilia Foundation, New York, NY, USA;2 Departments of Internal Medicine and Pediatrics, Rush University, Chicago, IL, USACorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0002-7927-6418View further author information
ORCID Icon,
Judith R Baker3 Center for Inherited Blood Disorders, Orange, CA, USAORCID Iconhttps://orcid.org/0000-0002-7850-0027View further author information
ORCID Icon,
Regina Butler4 Children’s Hospital of Philadelphia, Philadelphia, PA, USAView further author information
,
Miguel Escobar5 Department of Internal Medicine, University of Texas Health Science Center at Houston, Houston, TX, USAORCID Iconhttps://orcid.org/0000-0002-2944-0240View further author information
ORCID Icon,
Neil Frick1 National Hemophilia Foundation, New York, NY, USAView further author information
,
Susan Karp6 University of California, San Francisco, San Francisco, CA, USAView further author information
,
Kollet Koulianos1 National Hemophilia Foundation, New York, NY, USAView further author information
,
Susan Lattimore7 Department of Pediatrics, Oregon Health & Science University, Portland, OR, USAView further author information
,
Diane Nugent3 Center for Inherited Blood Disorders, Orange, CA, USAORCID Iconhttps://orcid.org/0000-0002-1109-0879View further author information
ORCID Icon,
Joseph N Pugliese8 Hemophilia Alliance, Lansdale, PA, USAView further author information
,
Michael Recht7 Department of Pediatrics, Oregon Health & Science University, Portland, OR, USA;9 American Thrombosis and Hemostasis Network, Rochester, NY, USAView further author information
,
Mark T Reding10 Department of Internal Medicine, University of Minnesota Medical Center, Minneapolis, MN, USAView further author information
,
Michelle Rice1 National Hemophilia Foundation, New York, NY, USAView further author information
,
Constance B Thibodeaux11 Departments of Internal Medicine and Pediatrics, Hemophilia Center, Tulane University School of Medicine, New Orleans, LA, USAView further author information
&
Mark Skinner12 Institute for Policy Advancement Ltd, Washington, DC, USA;13 Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, CanadaView further author information
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Pages 897-911 | Published online: 21 Oct 2021

Citations (16)

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E. Carlos Rodriguez-Merchan. (2023) The role of intraarticular injections of hyaluronic acid in joint pain relief in hemophilic arthropathy. Expert Review of Hematology 16:11, pages 811-817.
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Vanessa R. Byams, Judith R. Baker, Cindy Bailey, Nathan T. Connell, Melissa S. Creary, Randall G. Curtis, Alexis Dinno, Christine J. Guelcher, Michelle Kim, Roshni Kulkarni, Susan Lattimore, Keri L. Norris, Lucy Ramirez, Mark W. Skinner, Susan Symington, Patricia Tobase, Esmeralda Vázquez, Beth B. Warren, Emily Wheat & Tyler W. Buckner. (2023) Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science. Expert Review of Hematology 16:sup1, pages 87-106.
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Leonard A. Valentino, Michelle L. Witkop, Maria E. Santaella, Donna DiMichele & Michael Recht. (2023) The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary. Expert Review of Hematology 16:sup1, pages 129-134.
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Margaret V. Ragni, Guy Young, Glaivy Batsuli, Emily Bisson, Shannon L. Carpenter, Stacy E. Croteau, Adam Cuker, Randall G. Curtis, Michael Denne, Bruce Ewenstein, Amber Federizo, Neil Frick, Kerry Funkhouser, Lindsey A. George, W. Keith Hoots, Shawn M. Jobe, Emily Krava, Christopher James Langmead, Roger J. Lewis, José López, Lynn Malec, Ziva Mann, Moses E. Miles$suffix/text()$suffix/text(), Emma Neely, Ellis J. Neufeld, Glenn F. Pierce, Steven W. Pipe, Lisa R. Pitler, Leslie Raffini, Kathaleen M. Schnur & Jordan A. Shavit. (2023) Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding. Expert Review of Hematology 16:sup1, pages 107-127.
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Leonard A. Valentino, Michelle L. Witkop, Maria E. Santaella, Donna DiMichele & Michael Recht. (2023) The National Hemophilia Foundation’s State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders. Expert Review of Hematology 16:sup1, pages 1-5.
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Duc Q. Tran, Craig C. Benson, Judith A. Boice, Meera Chitlur, Amy L. Dunn, Miguel A. Escobar, Kalpna Gupta, Jill M. Johnsen, James Jorgenson, Scott D. Martin, Suzanne Martin, Shannon L. Meeks, Alfredo A. Narvaez$suffix/text()$suffix/text(), Doris V. Quon, Mark T. Reding, Ulrike M. Reiss, Brittany Savage, Kim Schafer, Bruno Steiner, Courtney Thornburg, Lena M. Volland & Annette von Drygalski. (2023) Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia. Expert Review of Hematology 16:sup1, pages 19-37.
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Katharine Batt, Shan Xing, Maja Kuharic, Michael Bullano, Jorge Caicedo, Sreya Chakladar, Riddhi Markan & Sepehr Farahbakhshian. (2023) Real‐world analysis of patients with haemophilia A and haemophilia A carriers in the United States: Demographics, clinical characteristics and costs. Haemophilia 29:3, pages 809-818.
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Laurie Fraticelli, Julie Freyssenge, Emilie Promé-Combel, Eléonore Agnellet, Yesim Dargaud & Valérie Chamouard. (2023) Evaluation of the Care Pathway in the Context of the Dispensing of Emicizumab (Hemlibra) in Community Pharmacies in France: Protocol for a Cross-sectional Study Based on the Kirkpatrick Model. JMIR Research Protocols 12, pages e43091.
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Nina Sheridan, Beth Thompson, Lauren Lichten, Karlene Coleman & Robert SidonioJr.Jr.. (2023) The emotional experience of mothers of children with haemophilia: maternal guilt, effective coping strategies and resilience within the haemophilia community. Haemophilia 29:2, pages 513-520.
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Anjali Sharathkumar & Ali G Mokdad. (2023) Review of Potential Barriers to Effective Hemostatic Management of Acquired Hemophilia A by Non-Hemophilia Experts in the United States. Cureus.
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Fiona Robinson, Sonji Wilkes, Nathan Schaefer, Miriam Goldstein, Michelle Rice, Johanna Gray, Sharon Meyers & Leonard A. Valentino. (2023) Patient-centered pharmacovigilance: priority actions from the inherited bleeding disorders community. Therapeutic Advances in Drug Safety 14, pages 204209862211464.
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Leonard A. Valentino, Michelle L. Witkop, Maria E. Santaella, Donna DiMichele & Michael Recht. (2022) Building the blueprint: Formulating a community‐generated national plan for future research in inherited bleeding disorders. Haemophilia 28:5, pages 760-768.
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Glenn F Pierce, Megan Adediran, Saliou Diop, Amy L Dunn, Magdy El Ekiaby, Radoslaw Kaczmarek, Barbara A Konkle, Steven W Pipe, Mark W Skinner, Leonard A Valentino, Fiona Robinson, Georgios Ampartzidis, Jayson Martin & Assad Haffar. (2022) Achieving access to haemophilia care in low-income and lower-middle-income countries: expanded Humanitarian Aid Program of the World Federation of Hemophilia after 5 years. The Lancet Haematology 9:9, pages e689-e697.
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Karina Lopez, Keri Norris, Marci Hardy & Leonard A. Valentino. (2022) Defining the Impact of Social Drivers on Health Outcomes for People with Inherited Bleeding Disorders. Journal of Clinical Medicine 11:15, pages 4443.
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Steven W. Pipe, K. Rajender Reddy & Pratima Chowdary. (2022) Gene therapy: Practical aspects of implementation. Haemophilia 28:S4, pages 44-52.
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Michael Recht, Chunla He, Er. Chen, Dunlei Cheng, Paul Solari & David Hinds. (2022) Resource utilization and treatment costs of patients with severe hemophilia A: Real‐world data from the ATHNdataset. eJHaem 3:2, pages 341-352.
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