Thank You for Being Part of 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

ATHN Data Summit 2025 was all about Where Data Drives Discovery. We 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 explored how ATHN’s unique data infrastructure is supporting research projects that leverage data to answer scientifically and clinically meaningful questions—and much more.

Thank you to all of our presenters (via video, livestream, and posters), exhibitors, and participants for making this year’s virtual event a wonderful success!

Agenda Highlights

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

Special Guest Presentation

  • Introduction
  • Inequities in Clinical Research

Women and Girls with Bleeding Disorders Session

  • Introduction
  • ATHN 9: Von Willebrand Disease and Novel Therapies
  • 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

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

Presentation Replays

In case you missed or would like to rewatch any of the sessions from the Data Summit, all presentation videos are available in the ATHN Support Center. Simply log in using the button below to access the videos.

View Presentations

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

Industry Consortium Partners Logo

Thank you
to our Community Partners

Community Partners Logo

For any questions about the ATHN Data Summit, please contact support@athn.org