Plain-English translation of NCT04398628 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
ATHN Transcends is a 15-year tracking study designed to follow thousands of people with blood disorders—including hemophilia, von Willebrand disease, platelet disorders, and other bleeding or clotting conditions. Researchers will collect health information regularly to understand how these conditions progress and how well different treatments work. Some participants may also be enrolled in specific medication modules, such as those testing Efanestoctocog alfa (ALTUVIIIO®), Emicizumab (Hemlibra®), Nonacog beta pegol (Rebinyn®), or Etranacogene dezaparvovec (HEMGENIX®), depending on their condition and treatment needs.
Blood disorders like hemophilia and von Willebrand disease are rare, and doctors need long-term, real-world data to better understand how these conditions affect people's lives and how well current and emerging treatments work over time. This study will help improve care and guide future treatment decisions.
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You would visit a study site at enrollment and then check in every 6 months or annually for at least 15 years, though some participants may continue longer. At these visits, researchers will collect health information, review your medical records, and ask about your symptoms and how your treatment is working. Depending on which specific arm or module you're enrolled in, you may also provide additional data about how you're doing on a particular medication, or you may simply share your health history to help researchers understand your disorder's natural course.
AI-generated summary from trial data · Jul 19, 2026 · Not medical advice
United States