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CDC Adds New Online Tool to See Bleeding Disorder Statistics

By Jeff Cornett, RN, MSN, Vice President of Research and Public Policy

Published September 19, 2019


Are you doing a school report on bleeding disorders? Do you want to see how you compare to other people with bleeding disorders in the U.S.? This past May, the Centers for Disease Control and Prevention (CDC) launched a new online tool that will be of interest to you. It is called the Data Visualization Tool and you can find it here.  

When people are seen at a Hemophilia Treatment Center (HTC), they are given the opportunity to participate in the CDC Community Counts program, which collects data on people with inherited bleeding disorders. This is a voluntary program with strict confidentiality guidelines. You can’t see information on the CDC website that would identify any patient. What you can see are statistics about the 16,875 people currently enrolled in the system.

You can use the search tool to view specific information – there are even tutorials to show you how. For example, you can use the data filters to determine what percentage of men with hemophilia are currently classified as being obese (31.4 percent). You can find out how many Hispanic women with Type 1 VWD are enrolled in the program (285). You can discover which state in the southeast has the most patients enrolled (hooray for Georgia!). The information is updated regularly, so you are always seeing the latest figures. The CDC also has plans to make more categories available soon.