$5.4M in expenses

Athn research programs:athn, in conjunction with our 140+ hemophilia treatment centers (HTCS) across the united states, leads or supports a number of programs that leverage our staff expertise and infrastructure.our leading 2024 research programs include:athn transcends - the world's largest natural history study of people affected by non-neoplastic hematologic conditions, was created in response to the national heart, lung, and blood institute's (nhlbi) blueprint for factor viii inhibitor clinical trials. With the primary aim of determining the safety of all therapies utilized in this population.athn transcends plans to enroll participants into various cohorts based on diagnosis. Athn transcends' study architecture is designed to encourage the creation of modules exploring specific safety and effectiveness endpoints. In addition, the athn research biorepository, located at versiti, blood center of wisconsin, will store biospecimens from athn transcends for future research.athn transcends is organized into seven (7) cohorts: 1. Hemophilia 2. Von willebrand disease 3. Thrombosis/thrombophilia4. Non-neoplastic hematologic conditions5. Bleeding not otherwise specified (nos) 6. Rare blood disorders7. Congenital platelet disorders

$4.1M in expenses

Community counts CDC public health surveillance project (CDC):this federal project is led by athn in partnership with the centers for disease control and prevention (CDC) and the u.s. Hemophilia treatment center network. Its aim is to collect data on people with bleeding and clotting disorders and increase knowledge, monitor trends, identify risk factors, and more. In 2020, the CDC renewed athn's 5-year cooperative agreement to continue the community counts project and:- strengthen collaboration with treatment centers - continue data and specimen collection and transfer- evaluate data quality and improvement- share information with the communityusing athn systems, over 453,000 surveillance forms have been submitted to CDC for more than 141,000 unique patients.

$3.3M in expenses

Athn systems:this program comprises the software systems and capabilities required as a steward of a secure national database used to support clinical outcomes analysis, research, and public health with reporting by over 140 treatment centers, government entities, and researchers.

$619K in expenses

National hemophilia program coordinating center (nhpcc):the nhpcc supports a collaborative and integrated national infrastructure of regional hemophilia networks to promote access and quality of care for people with blood disorders. The nhpcc is funded by a health resources and services administration (hrsa) cooperative agreement through athn, its sponsoring organization. Athn received a new five-year cooperative agreement in june 2022 carrying the project into 2027. The nhpcc's quality improvement program uses evidence-based practices to improve access to care, transition of care, patient engagement, and more. This program has used results of the first-ever national patient needs assessment, completed by the nhpcc, to prioritize and launch quality improvement initiatives at HTCS across the u.s.

$631K in expenses

Athn data quality counts is helping athn affiliates enrich the athn dataset. The promise of using data for research, surveillance, and quality improvement relies on data that is complete and accurate. Athn data quality counts provides the critical funding needed to build data management capacity across the athn affiliate network and enrich theathndataset. Since our inception, athn has distributed over $8.1m in DQC grants to our network of HTCS.