The American Thrombosis and Hemostasis Network (ATHN)

Study ID
STU 032011-155

Cancer Related
No

Healthy Volunteers
No

Study Sites

Contact
Anna Winborn
214-456-8185
anna.winborn@childrens.com

Principal Investigator
Janna Journeycake

Summary

ATHN has entered into Affiliate Agreements with over 85% of the federally funded U.S. Hemophilia
Treatment Centers (HTCs) to support and maintain a common information infrastructure that ensures
standardization, promotes efficiency and conserves resources. Presently, routine clinical data is collected
at the local level by the majority of ATHN Affiliates using client server-based software specifically
developed for the HTC network. This clinic and data management software known as Lab Tracker, has
enhanced the efficiency of data management and simplified data reporting to the Maternal and Child
Health Bureau (MCHB) and the Centers for Disease Control and Prevention (CDC), the agencies that
provide HTC funding for care. The information is presently reported through the IRB approved study; Universal Data Collection, STU 082010-227.

To further improve and increase data collection and management, ATHN secured
substantial resources and has directed the development of the next generation infrastructure, a web-based
platform powered by Web Tracker, which is now ready to be launched nationally. The new platform
includes a variety of security enhancements, including more sophisticated patient de-identification, user
authentication capabilities and off-site data housing with duplication at a separate disaster recovery site.
The new system allows for centralized software updates to ensure that all sites are using the most current
version of the software, and applies data standardization such as SNOMED(TM) encoded pick lists to ensure
greater consistency within and across clinical sites.

Patients will be ask to participate of the ATHN Patient Authorization Opt in to Participate in ATHNdataset duirng a standard of care visit at the Center for Cancer and Blood Disorders at Children and amp;apos;s Medical Center Dallas. Adult patients will be asked to participate during a standard of care visit at Simmons Cancer Center Clinic at UT Southwestern and the Benign Hem Clinic at Parkland Health and Hospital Systems.

Participant Eligibility

Patients of a Hemophilia Treatment Center.