As of May 30th, more than 10,000 patients have chosen to “opt in” to the ATHNdataset, a registry of medical data useful for evaluating care, research and advocacy.
The ATHNdataset was created through a partnership between the American Thrombosis and Hemostasis Network (ATHN), a nonprofit organization committed to advancing and improving care for people affected by bleeding and clotting disorders, and more than 130 hemophilia treatment centers (HTCs).
The ATHNdataset is:
- Confidential: all information used to identify a person is removed
- Simple: no special blood tests, procedures, or treatments are required
- Secure: it will only be used for research and advocacy
One of the greatest benefits of the ATHNdataset is its power to begin addressing questions that haven’t been answered before about bleeding and clotting disorders, inhibitors and treatment. The ATHNdataset opens the door to new possibilities for our community now and in the future. The more patients contribute their information, the more certain we can be that the ATHNdataset represents the whole community.
Other ATHN projects include ATHNadvoy and ATHNready. ATHNadvoy is the leading Web-based and mobile tool used by patients to track bleeds and infusions. HTCs use the patient-reported information to customize care plans. ATHN launched the new ATHNadvoy in February including an app for the iPad, iPhone and iPod touch mobile digital devices. For the first time, records can be part of a patient’s HTC medical record. In October 2011, HTCs began giving patients ATHNready flash drives with their own Personal Health Report of core medical information. Ask your HTC how ATHN programs can help you today.
Visit the ATHN Web site to learn more.
ATHN follows all HIPAA privacy guidelines to keep personal health information confidential.