Patient Overview

Overview for Patients

We’re working with HTCs to transform care for you—and the bleeding disorders community.

Your hemophilia treatment center (HTC) is part of the American Thrombosis and Hemostasis Network (ATHN). This means it is part of a special group of HTCs across the country that are working with ATHN to improve the quality of life for people with bleeding and clotting disorders. ATHN is helping HTCs by building safe and secure national health data resources that can be used to support vital research and ultimately improve care.

As a member of the bleeding and clotting disorders community, you have the unique ability to participate in important research projects aimed at improving care for people with bleeding disorders. The more patients participate, the more data can be collected, and the more beneficial it can be for you—and the bleeding disorders community.

When you participate in an ATHN project, you are helping to:

  • Increase knowledge of bleeding and clotting disorders and treatments
  • Better understand the clinical, social, and economic issues affecting patients and their families
  • Keep a closer watch on the safety of FDA-approved therapies
  • Improve community support, advocacy, and education

ATHN Research Projects

Right now, patients across the U.S. are participating in ATHN national projects including the ATHNdataset, Community Counts – CDC Public Health Surveillance Project for Bleeding Disorders, My Life, Our Future, ATHN 1 –Cardiovascular Disease in the Hemophilia Population, ATHN 2 – Factor Switching Study, ATHN 4 - Transition of Care for Patients with VTE, and others.

Using Technology to Improve Care

ATHN is working with your HTC to provide the following technologies and services that can help improve your care and quality of life:

ATHNadvoy – A simple app that lets you track your bleeds and infusions wherever you are, from any device.

ATHNready – A flash drive containing your health information that you keep handy at all times in the event of an emergency. >

ATHNadvoy lets you take control of your care—anytime, anywhere.

Keeping track of your bleeds and infusions is an essential part of managing your treatment and making sure you get the best care possible. Now it’s easier than ever to track your progress, whenever and wherever you are. ATHNadvoy is a smart, simple app that allows you to keep track of your bleeds and infusions, and then share that information with your hemophilia treatment center (HTC)—from your computer or mobile device.

With ATHNadvoy, data from your log is securely tracked alongside your medical record at your HTC. This means that you and your health care team can work together to:

  • Plan – If your care team knows how many bleeds you have had, they can plan your treatment schedule to better fit your lifestyle and prevent problem areas from becoming severe.
  • Connect – Your HTC can identify patterns between infusions and activities that may have led to bleeding and then more precisely tailor your treatment plan by connecting this key information.
  • Alert – When factor lot numbers are logged, your HTC can alert you immediately if there are ever concerns about contamination or recall of a factor product.
  • Advocate – More insurance companies are requiring bleed and infusion logs before they will approve shipments of factor. With ATHNadvoy, the specific information to support your care is right at your fingertips.

ATHN follows all HIPAA privacy guidelines to make sure your personal health information and data from ATHNadvoy are kept confidential.

ATHNadvoy is made possible in part through a donation from Baxter Healthcare Corporation.

In case of emergency, be prepared with ATHNready.

The National Hemophilia Foundation (NHF) recommends that patients keep their medical information up to date and carry it with them at all times in case of an emergency. To address this need, the American Thrombosis and Hemostasis Network (ATHN) offers ATHNready, a program that helps ensure that your medical information is safe and available whenever and wherever you may need it.

ATHNready is a simple, handy flash drive provided by your HTC that contains your core health information in a report called the ATHNready Personal Health Report. This report includes important health information such as:

  • Your diagnosis
  • What kind of factor you use
  • HTC and emergency contact information

With the ATHNready Personal Health Report, you can even further customize the report with your insurance information or other details.

Patients who use ATHNready have found peace of mind having their health information at the ready. In addition to being prepared in case of an emergency, you can also use ATHNready for planning everyday situations like printing out copies for childcare providers.

Ask your HTC how you can participate in an ATHN project today.

ATHN follows all HIPAA privacy guidelines to keep personal health information confidential. ATHNready was funded in part by CDC grant #27DD000319.

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