Welcome to ATHN Data Summit 2025
Each year, the ATHN Data Summit invites colleagues from our ATHN-affiliated centers, collaborating partners, and community-based organizations to come together, share discoveries, and celebrate progress on behalf of the rare disorders community.
Where Data Drives Discovery
Our theme for ATHN Data Summit 2025 is Where Data Drives Discovery. We’re excited to bring together leading experts in blood disorders research and top clinicians to share their perspectives through ground-breaking presentations and robust Q&A sessions. Together, we’ll explore how ATHN’s unique data infrastructure supports research projects that leverage data to answer scientifically and clinically meaningful questions—and much more.
Introduction
- Introduction & Welcome
- Discover with ATHN
Hemophilia Session
- Today’s Hemophilia Landscape Through the Lens of ATHN
PUPs Session
- Previously Untreated Patients (PUPs): Current State
- ATHN Transcends: Hemophilia PUPs Arm and ALTUVIIIO® Module
Q&A
Inhibitors Session
- Inhibitors in Hemophilia A
- Laboratory Tests for People with Inhibitors
- Treatment Strategies for Living with Inhibitors
- Inhibitor Development
Gene Therapy Session
- Importance of Gene Therapy Registries: Building a Foundation for Long-Term Success
- Base Editing to Correct Disease-Causing Genetic Variants
Q&A
OPHI and Partner Presentations
- Updates from the Field
- Hemophilia Alliance Update
- Mountain States Region
- Community Counts Update
- News from the NHPCC
- Using GIS Data to Inform Satellite Clinic Capabilities
- Mid-Atlantic QI Project
Day 1: Conclusion – @3:30 PM
Special Guest Presentation
- Introduction
- Inequities in Clinical Research
Women and Girls with Bleeding Disorders Session
- Introduction
- ATHN 9: Von Willebrand Disease and Novel
- Bleeding Disorder of Unknown Cause (BDUC)
- Leveraging Medical Records to Advance Maternal Health Research
Q&A
ATHN Leadership Award Presentation
- Lusher-Shapiro Award
Rare Coagulation/Rare Disorders Sessions
- Introduction to Rare Coagulation Disorders
- ATHN Transcends: Glanzmann Thrombasthenia Module
- Inherited Bleeding Disorders Pakistan Experience
- Bringing ATHN Research Studies to the Community: One Drop Event
- Live Panel Discussion, Collaboration, and Talk About Positive Experience
Q&A
- Introduction to Rare Disorders
- Novel Variants and the Need for Genetic Testing
- Plasminogen Deficiency Type 1: A Multi-System Disorder
Day 2: Conclusion – @3:56 PM
ATHN Leadership Award Presentation
- Trish Dominic Award
ATHNdataset Session
- Introduction to ATHNdataset
- DREAM Award: Prevalence and Risk Factors for Thromboembolism in People with Inherited Bleeding Disorders
- Pediatric Antiphospholipid Antibody Syndrome
- ATHNdataset Program
- Longitudinal Evaluation of Vector-Mediated Cellular Immunity Observed in Bleeding Disorder Gene Therapy Patient
Investigator-Initiated Projects
- Introduction
- The Iron Ladies: Prevalence and Risk Factors of Iron Deficiency in Females with Bleeding Disorders
- Mid-Atlantic Region Emicizumab Surgery and Procedure Project: Current Results
- Inhibitors and Obesity: The Prevalence and Strength of Association in People with Hemophilia
- The Impact of Obesity on Chronic Pain in Patients with Hemophilia
- Analysis of Factors Affecting the Age of Hemophilia Diagnosis in Patients That Are Female Assigned at Birth
EMR Integration Session
- ATHN EMR Integration
- ATHN Clinical Manager – Automated Import
- Manual EMR Data Implementation
- Live Panel Discussion
Closing Remarks
Day 3: Conclusion @2:36 PM
Register Today
Registration is open for ATHN Data Summit 2025! As always, there’s no fee to participate, but you must be registered so we can send you the access link for the virtual event. See you soon!
Thank You
As always, we are grateful for the generous contributions and support from the ATHN Industry Consortium and Community Partners.
Thank you
to the ATHN Industry Consortium
Thank you
to our Community Partners
For any questions about the ATHN Data Summit, please contact support@athn.org