Congratulations to the first HTCs and investigators enrolling patients in the ATHN Transcends: INHIBIT Module!
This important study will help advance our understanding of inhibitor development in children starting prophylaxis treatment.
Learn more: tinyurl.com/ffd5f76b
Big ideas. Bold research. Real impact.
Join the conversations shaping the future of bleeding disorders care, research, and data-driven discovery.
Abstract Deadline: June 15
đź”— athn.org/events/data-...
#ATHNDS26 #Hemophilia #RareDisease #BleedingDisorders
⏰ Early registration for ATHN Data Summit 2026 ends June 18! Join us Oct. 21–22 in New Orleans for two days of discovery, collaboration, & innovation in blood disorders care as we celebrate 20 years of progress powered by data & driven by purpose. Register now and save at athn.org/events/data-...
⏳ The countdown is on! Abstract submissions for #ATHNDS26 close on June 15.
Share your discoveries, showcase your research, and join the scientific conversations advancing blood disorders care, research, and innovation.
Submit your abstract today: athn.org/events/data-summit.html
Call for Abstracts: ATHN Data Summit 2026. Share your discoveries. Advance future care. Submit your abstract highlighting research, ATHNdataset insights, quality improvement initiatives, and innovation across the blood disorders community. Deadline: June 15, 2026 Learn more: tinyurl.com/5n7bmxcc
New research published in JPHO used the ATHNdataset to examine bleeding phenotypes in inherited platelet function disorders. Real-world data continues to advance understanding, support research, and help shape the future of blood disorders care. journals.lww.com/jpho-online/...
Early Registration for ATHN Data Summit 2026 has been extended through June 18!
Join us Oct. 20–22 in New Orleans for research spotlights, real-world data insights, interactive discussions, specialty tracks, posters, networking & more as we celebrate 20 years of progress. #ATHNDS26
Across the #ATHN Network, physicians, nurses, coordinators, data managers, & research professionals are working together to advance discovery & improve care in bleeding disorders. This #ClinicalTrialsDay, we celebrate the people powering progress. #Hemophilia #ResearchRising
Registration Now for Georgia Clinical Trials Day 2026!
đź“… June 13 | Atlanta, GA
Join clinical research leaders for conversations on innovation, workforce readiness & patient access. Featuring Policy & Clinical Research Expert David Vulcano. Seats limited. Register Now: tinyurl.com/ClinicalTria...
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ned. Objective: To characterize the bleeding phenotype, treatment patterns, and diagnostic distribution of IPFDs across the United States using the national ATHNdataset. Methods: We conducted a retrospective cohort study using the ATHNdataset, a deidentified registry maintained by the American Thrombosis and Hemostasis Network. Clinical outcomes, including bleeding events, laboratory data, treatments, and procedures, were analyzed for participants with IPFDs between 2013 and 2022 and with active follow-up from January 2021 to December 2022. Results: Among 2302 individuals with IPFDs, 8.1% as GT, 2.4% as BSS, 7.0% as granule defects, and 81.6% as IPFD-other. Among 985 participants with active follow-up, 236 bleeding events were reported across 251 patients. The most common events were epistaxis (42.8%), followed by soft tissue (14.4%) and oral bleeding (13.9%). Notably, intracranial hemorrhage occurred in 8 patients and joint bleeds in 82, reflecting significant morbidity across all subtypes. Median ISTH-BAT scores were elevated—13 in GT, 16 in dense-granule defects, and 7 in unclassified IPFDs—exceeding reported population norms. Regarding hemostatic management, antifibrinolytics were used in over half of all patients, with desmopressin and platelet transfusions being used less frequently. Conclusion: By defining the clinical spectrum, treatment utilization, and residual diagnostic uncertainty across IPFDs, this study underscores the importance of improving diagnostic precision and care for patients with platelet function disorders in the modern era....
