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The Registry for Bleeding Disorders Surveillance

Community Counts – The Registry for Bleeding Disorders Surveillance

Description:

The purpose of this project is to gather and share information about common health issues, medical complications, and causes of death that affect people with bleeding disorders cared for in the U.S. Hemophilia Treatment Centers (HTCs). Community Counts aims to continue the work of the Universal Data Collection System, which ended in 2011.

For complete information, please visit the Registry website.

Who May Qualify?:

Patients that were diagnosed with a bleeding disorder at birth and receive care at a hemophilia treatment center (HTC). Their condition must be one of the following disorders: Hemophilia A, (Classic Hemophilia/hereditary factor VIII (factor 8) deficiency). Hemophilia B, (Christmas disease/hereditary factor IX (factor 9) deficiency). von Willebrand disease. Please visit the website for other exceptions.

Who Does Not Qualify:

Patients not diagnosed at birth.

Interested in participating?
We are currently recruiting
Study Sponsor:

The Centers for Disease Control and Prevention (CDC).

Full IRB Study Title:
CDC Public Health Surveillance Project (CDC PHSP) for Bleeding Disorders, Mortality Reporting and The Registry for Bleeding Disorder Surveillance
IRB Study ID:
130809
If you are interested in this study or have questions about your child's eligibility, please contact:
Rebecca D. Considine Research Institute, 330-543-3193 or email research@akronchildrens.org
Lead Investigator
John Fargo, DO

Director, Hemostasis and Thrombosis Center; Divisional Quality Improvement; Pediatric Hematologist-Oncologist
Showers Family Center for Childhood Cancer and Blood DisordersPediatric Stem Cell Transplant Program