Category: Research Opportunities
Studies, trials, registries and surveys open to people with HHT. Posts in this category appear in the filter on Participate in Research.
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HHT Connect, the global registry
Run by Cure HHT · Open worldwide · From home | The first global patient registry for HHT. Free, voluntary, and open to anyone…
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CHORUS, the US HHT registry
Run by Cure HHT · 15 US Centers recruiting | A long-term registry following the same people across years, because that is the only…
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The Cure HHT Biobank
Run by Cure HHT · Sample donation | Tissue, blood and other samples are what laboratory researchers actually work with when they study the…
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How HHT affects daily life
WashU HHT Center of Excellence · Online survey | Dr. Jay Piccirillo’s team is asking what HHT actually costs you day to day, to…
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NARRATE Study
Children’s Hospital of Philadelphia · Online survey | A rare disease survey on the communication gaps between patients, families and physicians.
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HEROIC (HHT-301)
Vaderis · Phase 3 · United States and Europe | A once-daily oral capsule, tested against nosebleed frequency and severity, quality of life, and…
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Harmony-HHT
Atavistik Bio · Phase 1/2 · United States and globally | Open to adults with moderate to severe HHT based on frequent nosebleeds.
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AVIATOR Study
UCSF HHT Center of Excellence · San Francisco, CA | Testing whether one fast MRI can screen the brain, lungs and liver in a…
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DIAG723
Diagonal Therapeutics · Clinical trial · Australia, New Zealand and Canada | Sites are open now, with more to be announced. A short form…
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ALN-6400-001
Alnylam · Clinical trial · At an HHT Center | A study of an investigational medication for people living with HHT, testing both safety…