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ASH 2025 | The comprehensive HHT outcomes registry of the United States (CHORUS)
Hanny Al-Samkari, MD, Massachusetts General Hospital, Boston, MA, shares Data from the comprehensive hereditary hemorrhagic telangiectasia (HHT) outcomes registry of the United States (CHORUS). Dr Al-Samkari highlights the key findings from the report, including the high prevalence of moderate to severe mucosal bleeding, heavy menstrual bleeding, and serious neurologic and cardiopulmonary complications. This interview took place at the 67th ASH Annual Meeting and Exposition, held in Orlando, FL.
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Transcript
CHORUS is the Comprehensive Hereditary Hemorrhagic Telangiectasia, or HHT, Outcomes Registry of the United States. It is a first-of-its-kind comprehensive HHT registry that is actually funded by the U.S. government through HRSA. And it’s like the HHT equivalent of ATHN, the American Thrombosis and Hemostasis Network Registry in Hemophilia. And CHORUS collects 2,400 unique data points, over 2,400 unique data points for every patient...
CHORUS is the Comprehensive Hereditary Hemorrhagic Telangiectasia, or HHT, Outcomes Registry of the United States. It is a first-of-its-kind comprehensive HHT registry that is actually funded by the U.S. government through HRSA. And it’s like the HHT equivalent of ATHN, the American Thrombosis and Hemostasis Network Registry in Hemophilia. And CHORUS collects 2,400 unique data points, over 2,400 unique data points for every patient. So it is a very, very deep, comprehensive evaluation of these patients. This report, which was selected as an oral abstract at ASH this year, was the report from the first 600 patients that were enrolled into CHORUS. And it was really dramatically eye-opening. In addition to showing that three-quarters of patients with HHT have moderate to severe mucosal bleeding, epistaxis, gastrointestinal bleeding, heavy menstrual bleeding. It showed for the first time the prevalence of heavy menstrual bleeding in women with HHT. Over a third of women with HHT have heavy menstrual bleeding. It showed for the first time the incidence of intracranial hemorrhage in HHT at 3%, which is actually significantly higher than patients with hemophilia being treated with modern-day prophylactic either factor or non-factor therapeutics and is analogous in many ways to the intracranial hemorrhage rate in hemophilia in the pre-prophylaxis days. It demonstrated high rates. One in five patients with HHT have serious neurologic complications like strokes, epilepsy, brain AVMs. One in 10 will develop serious cardiopulmonary complications like heart failure, pulmonary hypertension. I mean, it really opened our eyes to just how severe this inherited bleeding disorder is, and HHT being the second most common inherited bleeding disorder worldwide, twice as common as hemophilia, with no FDA-approved therapies, and the most morbid inherited bleeding disorder of women, really an area that is in great need of additional therapeutic innovation, and that’s finally beginning. But CHORUS really has shown us, as the first of its type registry, just how significant this disease impacts patients.
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