Patient Overview

Putting Your Data to Work

Participate today. Make your data count.

Doctors, scientists, policy makers, and other healthcare providers need a large pool of patient data to answer questions about the safest and most cost-effective way to treat bleeding and clotting disorders. They will use the information from the ATHNdataset to answer these questions, and address scientific, public health, and policy concerns. Having your health information in the ATHNdataset will ensure that decisions made represent all Americans with bleeding and clotting disorders, not just a select few.

What information is included in the ATHNdataset?

If you agree to let your health information be included in the ATHNdataset, the information will be regularly updated to reflect your current health status. The kinds of information that will be sent to ATHN include:

  • your type of blood disorder
  • the date you were diagnosed
  • your family history of the disorder
  • laboratory test results used to diagnose and keep an eye on your condition
  • whether or not your body keeps drugs used to treat blood disorders from working the way they should
  • your treatments and how they might vary to stop bleeding and clotting problems from occurring or getting worse
  • routine care and trauma
  • allergies
  • the types of bleeds you have and how well the bleeding is controlled*

How do I opt in?

To allow ATHN to use your data for this purpose, you will be asked to fill out and sign a Patient Authorization Form that allows your HTC to share your health information with ATHN. You will continue to “own” your information, even when it is included in the database.

For more information about participating in the ATHNdataset, talk to your care provider or Treatment Center.

*You may report bleeding and infusion information using tools such as ATHNadvoy.

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