Our Top Stories
- ATHN Transcends
ATHN Transcends is a natural history cohort study focused on participants with congenital or acquired non-neoplastic blood disorders and connective tissue disorders with bleeding tendencies. ATHN Transcends provides clinical researchers with a uniform, secure, unbiased, and enduring method to collect long-term safety and efficacy data to increase knowledge in these important areas of research.
- Electronic Informed Consent (eIC) and ATHN 9
ATHN’s new eConsent portal will facilitate and streamline the informed consent process for patients in ATHN studies. The eConsent portal is currently only available for participants enrolling in ATHN 9.
- AI/Machine Learning Research Grant
Pfizer has awarded ATHN a grant to research at the provider level hemophilia patients who are at risk for poor outcomes. The proposal will utilize a combination of machine learning and artificial intelligence (AI) to create a predictive model and share that knowledge with ATHN Affiliates. Contact firstname.lastname@example.org for more information.
Researchers rely on data from this vital community resource for a variety of ATHN research projects. Learn more about this safe, secure national database.
ATHN Data Quality Counts
This competitive award is supported by The Hemophilia Alliance, The Alliance Pharmacy, and Indiana Hemophilia & Thrombosis Center and provides funding to enrich the ATHNdataset.
- HP2020 Update for 2021
The number of persons with severe hemophilia who have >4 joint bleeds per year decreased from 17.4% in 2015 to 7.8% in 2020. Review this and other Healthy People 2020 measures updated with Community Counts data as of January 2021.
- NHPCC Resource Center
Looking for resources on NHPCC projects and initiatives? The NHPCC Resource Center makes it easy to find case studies, guidebooks, infographics, training materials, surveys, and more.
- Patient Experience of Care Survey
This survey is an important reporting tool and serves as the source for the Healthy People 2020 measure DH-5 – Transition Planning. The NHPCC reports data to HRSA as part of its federal funding grant. Reporting data for 2020 has been challenging given the COVID-19 pandemic and we appreciate all the effort HTCs have made to collect 849 valid survey results for 2020 despite limited in-person clinic visits.
- Rare Disease Day
- Gene Therapy for Blood Disorders Digital Event
Featured PublicationsTransition of Care for Pediatric and Adult Patients with Venous Thromboembolism: A National Quality Improvement Project from the American Thrombosis and Hemostasis Network (ATHN) published in Thrombosis Research. Download full article
Characterizing the Use of Anticoagulants in Children Using the American Thrombosis and Hemostasis Network Dataset (ATHNdataset) published in Thrombosis Research. Download full article
A Cross-Sectional Study of Women and Girls with Congenital Bleeding Disorders: The American Thrombosis and Hemostasis Network (ATHN) Cohort is the largest cohort of women and girls with bleeding disorders to date. Download full article