Clinical Trials / Research Studies
CDC Public Health Surveillance for Bleeding Disorders - Registry for Bleeding Disorders Surveillance
Why are we doing this research?
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 who receive care at U.S. Hemophilia Treatment Centers (HTCs).
Who can participate?
People who receive care at Hemophilia Treatment Centers (HTCs) are eligible to participate in Community Counts if they have been diagnosed with a bleeding disorder. Their condition must have been present since birth and must be one of the following bleeding disorders:
- Hemophilia A (Classic Hemophilia/hereditary factor VIII deficiency)
- Hemophilia B (Christmas Disease/hereditary factor IX deficiency)
- Von Willebrand Disease
- Certain rare clotting factor disorders and platelet disorders
Participation in this study is voluntary, and patients who choose to participate must give their written permission.
Conditions
- Hematology - Hemophilia
What will happen in the study?
If you choose to participate in the Registry for Bleeding Disorders Surveillance, health information will be collected at your annual comprehensive clinic visit. This can include treatment product use, presence of other medical conditions, and past bleeding events. Depending on your bleeding disorder diagnosis and the type of treatment product that you have received, a blood sample may also be requested about once a year. The blood sample would be collected during your regular hematology appointment labs and tested by the laboratory at the Centers for Disease Control (CDC) for certain viruses, an inhibitor (antibody) to treatment product, or both. Also, with your permission, a portion of your blood sample will be stored for possible use in future investigations of treatment product safety.
What are the good things that can happen from this research?
Participants can be tested for inhibitors for free. Participants will also receive free testing for exposure to Hepatitis C and HIV viruses.
Will I get all the facts about the study?
Parents interested in having their child participate, as well as adults interested in participating, may contact and meet with one of the study coordinators who will explain all of the details of the study. The study coordinator will review the consent form and will be sure that all questions are answered. The consent form explains study procedures, risks, benefits, and who to contact with questions or concerns. Study procedures will not begin until a parent/guardian or adult has signed this consent form. Depending on age, participants who are minors may need to sign the consent form and/or give his/her verbal agreement.
What are the bad things that can happen from this research?
Possible risks will be provided to those patients interested in knowing more about this study.
Will you/your child be paid to be in this research study?
There is no cost to participate in this study. There is no payment for participating in this study.
Contact
Elliot Smith
Email: elliot.smith@cchmc.org
Phone Number: 513-636-7198
Connie Harpring
Email: constance.harpring@cchmc.org
Phone Number: 513-803-7270
3333 Burnet Avenue, Cincinnati, Ohio 45229-3026
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