A community-based partnership to promote information infrastructure for bleeding disorders

Area of Science:

• Health Informatics
• Public Health
• Rare Diseases

Background:

• Rare disease specialists face challenges in collecting surveillance and research data.
• Electronic health information and interoperability standards offer potential for improved data management.
• Public-private support is needed for practitioners treating rare disorders to leverage these technologies.

Purpose of the Study:

• To describe the creation and benefits of a community-based partnership model for rare disease data collection.
• To demonstrate how the American Thrombosis and Hemostasis Network (ATHN) supports hemophilia treatment centers (HTCs).
• To present a replicable model for other rare disease communities.

Main Methods:

• Established ATHN in 2006 as a national, web-based database for HTCs.
• Formed formal partnerships with 127 out of 134 HTCs across 12 U.S. regional networks.
• Engaged government agencies (CDC, HRSA, NIH), consumer organizations, and industry leaders.

Main Results:

• Successfully created a secure, national database supporting HTCs.
• Facilitated community-based partnerships enhancing clinical outcomes analysis, research, advocacy, and public health reporting.
• Demonstrated public health benefits of a collaborative, multi-stakeholder approach.

Conclusions:

• The ATHN partnership model effectively addresses data collection challenges in rare disorders.
• This collaborative framework can be applied to other rare disease communities with significant public health impact.
• Public-private partnerships are crucial for advancing rare disease research and surveillance using electronic health information.