Highlights & Acknowledgements

2014 Report Highlights

• In the first year of data collection, 3,161 patients from 85 hemophilia treatment centers (HTCs) enrolled in the Community Counts Registry for Bleeding Disorders Surveillance (the Registry, hereafter), a public health monitoring program for patients with bleeding disorders receiving care at US HTCs.
• The participants who enrolled in the Registry in 2014 account for 7.3% of the bleeding disorders population treated at HTCs that year.
• The top three bleeding disorder diagnoses in the Registry were hemophilia A (59%), hemophilia B (15%), and von Willebrand disease (15%). Females accounted for 2.3% and males accounted for 97.7% among persons with hemophilia. Sixty-four percent of patients with von Willebrand disease were female and 36% were male.
• Nineteen percent of the Registry participants under 20 years of age were obese, a higher percentage than their counterparts (17%) examined in the National Health and Nutrition Examination Survey (2009 – 2010).
• Fifty-seven percent of the participants 25 years and older had an education greater than a high school degree.
• Hepatitis A or B vaccination status was unknown for about 18% of the participants less than 30 years of age and about 1/3 of participants greater than or equal to 30 years of age.
• Twelve percent of the participants reported to have ever had iron deficiency anemia. More females than males reported iron deficiency anemia (28% versus 8%, respectively).

Acknowledgements

We thank the American Thrombosis and Hemostasis Network for serving as the coordinating center for HTCs for Community Counts activities and providing the data platform to electronically record and transmit surveillance data.

We thank the Regional Coordinators and Regional Directors of the federal HTC regions for their assistance in the implementation of Community Counts. We also thank the HTC care providers and staff responsible for the enrollment of eligible patients and collection of surveillance data and specimens.

We appreciate the patients and families who contributed their information to the project.

We would also like to acknowledge the assistance of the members of the Community Counts Executive Committee who served during the first full year of Registry data collection:

Diane J. Aschman, MS
American Thrombosis and Hemostasis Network
Riverwoods, IL

Becky Dudley, MSW
American Thrombosis and Hemostasis Network
Riverwoods, IL

Steven Humes, MM, MPH
University of North Carolina at Chapel Hill
Chapel Hill, NC

Roshni Kulkarni, MD
Michigan State University Center for Bleeding Disorders & Clotting Disorders
East Lansing, MI

Marilyn Manco-Johnson, MD
University of Colorado Hemophilia and Thrombosis Center
Aurora, CO

Michael Recht, MD, PhD
Oregon Health & Science University
Portland, OR

Mariam Voutsis, RN, MPA
Icahn School of Medicine at Mount Sinai
New York, NY