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.
Welcome & Introduction
- ATHN 2025
- Discover with ATHN
Hemophilia Session
- Today’s Hemophilia Landscape
PUPs Session
- Previously Untreated Patients (PUPs) Current Considerations
- Observational Research – ATHN Transcends: Hemophilia PUPs Arm
Q&A
Inhibitors Session
- Current Practices for Inhibitor Testing
- Treating Strategies for Living with Inhibitors
- Early Signs of Inhibitor Development
Gene Therapy Session
- Importance of Gene Therapy Registries and ATHN Transcends: Hemophilia Gene Therapy Outcomes Arm
- Base Editing to Correct Disease-Causing Genetic Variants
Q&A
OPHI and Partner Presentations
- ATHN OPHI
- Hemophilia Alliance
- HTC Regional Spotlight
- Community Counts
- NHPCC
Day 1: Conclusion – @4:15 PM
Special Guest Lecture – Health Inequities in Clinical Research
Women and Girls with Bleeding Disorders Session
- ATHN 9, VWD, & New Therapies
- Bleeding Disorders of Unknown Cause (BDUC)
- Leveraging Medical Records to Advance Maternal Health Research
Q&A
ATHN Leadership Award
- Lusher-Shapiro Award
Rare Coagulation Disorders Session
- ATHN Transcends: Glanzmann Thrombasthenia Module
- Glanzmann Thrombasthenia in Pakistan Experience
- Bringing ATHN Research Studies to the Community: One Drop Event
Q&A
- Novel Variants and the Need for Genetic Testing (ATHN 10)
- Plasminogen Deficiency: Advances in Treatment
Day 2: Conclusion – @4:00 PM
ATHN Leadership Award
- Trish Dominic Award
ATHNdataset Session
- ATHNdataset Introduction
- DREAM Award: Prevalence and Risk Factors for Thromboembolism in People with Inherited Bleeding Disorders
- DREAM Award: Pediatric Antiphospholipid Syndrome National Registry
- ATHNdataset Evolution
- Adeno-Associated Virus Project with ATHNdataset Registry
Investigator-Initiated Projects
- Iron Ladies: Prevalence and Risk Factors of Iron Deficiency in Females with Bleeding Disorders
- Ongoing Results – Mid-Atlantic Region Emicizumab Surgery and Procedure Project
- Obesity and Inhibitors: The Prevalence and Strength of Association in People with Hemophilia
- Impact of Obesity on Chronic Pain in People with Hemophilia
- Analysis of Factors Affecting the Age of Hemophilia Diagnosis in Females
EMR Integration
- ATHN EMR Integration Project
- EMR Integration Case Studies
- Live Panel Discussion
Day 3: Conclusion @3:15 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. We can’t wait to connect with you this fall!
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