186945 Adopting a Standards Based Information Infrastructure for Rare Disorders Communities

Tuesday, October 28, 2008

Judith R. Baker, MHSA , Department of Pediatric Hematology Oncology, University of California Los Angeles, Los Angeles, CA
Diane J. Aschman, MS , American Thrombosis and Hemostasis Network, Riverwoods, IL

Rare disorder communities face unique interoperability challenges to adopting nationwide data infrastructure systems that can support emergency preparedness, clinical outcomes analysis, research, advocacy and public health reporting requirements.


To promote interoperability across a regional network of 130+ CDC and HRSA supported Hemostasis and Thrombosis Centers (HTC) and secure adoption of a standards based system.


In 2006, The American Thrombosis and Hemostasis Network (ATHN), was created to provide stewardship of a secure national data base for rare bleeding and clotting disorders.


ATHN has conducted presentations reaching hundreds of individuals at regional and national hemostasis and thrombosis clinician and patient conferences to promote the concept of standards based information system. ATHN received a large multi year grant infrastructure development grant, launched a website and a national publication to educate constituents about medical informatics, and a Community Liaison Group comprised of key public/private agencies. ATHN initiated a program to formalize relationships with the HTCs: over 25% of HTCs have become ATHN Affiliates. To determine HTC electronic data infrastructure capacity, ATHN conducted a needs assessment survey which determined that 21% of HTCs do not use electronic system to collect clinical data. To foster interoperability, a technology committee guides clinician teams who have begun to validate clinical content as represented within SNOMED CT. ATHN was awarded a CDC sponsored emergency preparedness planning grant.


ATHN serves as a model public health/medicine collaborative that holds great promise for achieving the adoption of standards based information technology for nationwide rare disorders communities.

Learning Objectives:
1. Describe strategies to increase success for rare disorders communities needing to create a standards based information infrastructure. 2. Outline three ways that regional networks can fast track needs assessment, information dissemination and adoption of new national public health electronic technology efforts. 3. Identify the benefit of being an ATHN affiliate.

Keywords: Children With Special Needs, Information Databases

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am Administrative Director of the Federal Hemophilia Treatment Centers/Region IX, and serve on the ATHN Community Relations Subcommittee.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.