Boston Hemophilia Center

Contact the Boston Hemophilia Center 617-355-6101
International +1-617-355-5209
Contact the Boston Hemophilia Center 617-355-6101
International +1-617-355-5209

COVID-19 Data Visualization Tool from the CDC

by BHC Clinical Research Coordinators: Lade Adeniyi, Kate Jolley, Micaela Hayton, & Hae Soo Park

The Centers for Disease Control Community Counts (CDC CC) project was created to learn more about risks of infectious disease, common health issues, and treatment complications for those with bleeding disorders who are cared for at Hemophilia Treatment Centers (HTCs) across the U.S. The goal of this project is to improve public health, so it’s important to make information from the CDC CC project (surveillance) available to the public.

Basic information (data) collected as part of the CDC CC project can be viewed with the CDC Data Visualization Tool, communitycountsdataviz.cdc.gov/blooddisorders. There is no individual patient information shared. The tool allows users to sort information by different groups. Types of information that can be viewed include demographic information, such as age and sex, and clinical information, such as disease severity and history of different viral infections. The tool puts information into charts to make it easy to view. By using the Data Visualization Tool, it’s possible to see how many people have hemophilia, von Willebrand disease, and other rare bleeding disorders. Information about severity, age range, sex and race is also available. Users can choose to view the number of patients in different bleeding disorder types or sort by other information and categories.

This tool only displays information for people who choose to participate in the CDC CC project, and anyone interested can learn more about bleeding disorders by working with the Data Visualization Tool.

The information provided through the CDC CC project is not only useful to learn more about how many people have bleeding disorders, but can also provide a sense of community to those with bleeding disorders. This type of project is unique and not available to other patient groups. Bleeding disorders are rare, so it can be helpful to see how many people have the same or similar condition.

The sense of community established from these data may be especially important for younger people who can view how many other people there are who are the same age with the same diagnosis. Day-to-day life with a bleeding disorder can be challenging, so having a project dedicated to collecting and learning more about our special population can benefit the whole bleeding disorder community and can be both empowering as a participant and hopeful as an observer.

Overall, the CDC CC project provides the opportunity to contribute and shape the medical care that people with bleeding disorders receive at HTCs. Also, participation in this study helps the CDC monitor bleeding disorder trends, which contribute to knowledge that ultimately benefits the bleeding disorder community. The CDC Visualization tool is a valuable resource for participants, the general public, payors, lawmakers, and health care providers to learn more about the health and needs of the bleeding disorder community.

    head shots of clinical research coordinators from the Boston Hemophilia Center
 CLINICAL RESEARCH COORDINATORS: From left, Lade Adeniyi, Kate Jolley, Micaela Hayton & Hae Soo Park

 


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