First Ever Patient Needs Survey Launched for National Hemophilia Program

The National Hemophilia Program Coordinating Center (NHPCC), funded by the federal government through the American Thrombosis and Hemostasis Network, a nonprofit organization committed to advancing and improving care for individuals with bleeding and clotting disorders, announced rollout today of the first ever national hemophilia program patient needs survey. The NHPCC is working with over 130 Hemophilia Treatment Centers (HTC) across the U.S., and the HTC regional leadership, to gather patient perspectives to help establish national priorities for quality improvement and program evaluation.
Surveys are being mailed in early September to patients with hemophilia and Von Willebrand Disease by the federally funded HTCs across the nation and patients are encouraged to participate to make their voices heard. The goal is to secure responses from at least 5,000 patients to help identify strengths and perceived gaps in currently available services. Broad participation is needed to help set national and regional goals, assess and address unmet needs.
Participation is simple, the survey only takes 15 – 20 minutes to complete, and it is available in English, Spanish, and in electronic format. A self addressed stamped envelope is included and all patient survey data is completely anonymous. Patient questionnaires will be received and data analyzed by a third party. The NHPCC and HTCs will not have access to any identifiable patient data.
“We are seeking input from all families served by HTCs,” said Amy D. Shapiro, M.D., Medical Director for the NHPCC; Co-medical Director and Pediatric Hematologist, Indiana Hemophilia and Thrombosis Center. “The answers to the survey questions will help our community improve access and quality of care for all patients. It is the hope that with broad patient participation, your answers will help make your local care the best it can be.”
Reports of the national data analysis will be published in November in multiple formats including at national and regional meetings, through consumer organizations like the National Hemophilia Foundation (NHF) and the Hemophilia Federation of America (HFA), and on the ATHN website.
This project is funded through the Health Resources and Services Administration grant #UC8MC24079-01. An NHPCC needs assessment working group comprised of HTC leadership, clinicians and patient representatives under the chairmanship of Regina B. Butler, RN, Clinical manager, Hematology; Nurse Coordinator, Hemostasis and Thrombosis Program Children’s Hospital of Philadelphia; Director Region III, Hemophilia Treatment Centers, consulted with Center for Community Health and Evaluation at Group Health Research Institute in Seattle, Washington to develop and test the survey. To learn more, visit
About the National Hemophilia Program Coordinating Center (NHPCC)
In June 2012, the Maternal and Child Health Bureau (MCHB) in the Health Resources and Services Administration (HRSA) funded the American Thrombosis and Hemostasis Network (ATHN) to establish the first National Hemophilia Program Coordinating Center. The NHPCC serves as a bridge between the regional hemophilia treatment center networks, helping to create value on a national scale. The NHPCC is partnering with regional leadership, over 130 ATHN Affiliate HTCs, National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and other patient advocacy groups, government partners, 340B pharmacy programs, the genetics and newborn screening collaborative, payers, and thought leaders to guarantee a community-wide perspective.
About ATHN
The American Thrombosis and Hemostasis Network (ATHN) is a nonprofit corporation founded in July 2006. ATHN is dedicated to advancing and improving the care of individuals affected by bleeding and blood clotting disorders. ATHN provides stewardship of a secure national database, adherent to all privacy guidelines, used to support clinical outcomes analysis, research, advocacy, and public health reporting in the hemostasis and thrombosis community. The organization is committed to the following shared values: improving clinical outcomes and continuity of care, facilitating research, fostering collaboration, maintaining confidentiality, and conserving resources through a standards-based data infrastructure. To learn more, visit