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Study: Validating a New Nosebleed Management Tool

Cure HHT, in partnership with doctors at Johns Hopkins’ Hospital HHT Center of Excellence, invites you to participate in a study aimed at validating a nosebleed eDiary tool that represents a critical element in our ability to gain FDA approval for future drugs and treatments.

Currently, a standardized tool does not exist that helps accurately capture and scale HHT patients’ data around quality of life and impact of their nosebleeds (duration, frequency, severity, etc.). By participating in the validation of this tool, you have the chance to help us develop a measurement system to help prove the benefit of future drugs and treatments during trials.

To participate, you must be over 18 and be clinically or genetically diagnosed with HHT. The study will run over 6 weeks total, where participants will be asked to take an initial 30-minute survey and complete nosebleed eDiary submissions regularly during the study period. Additional surveys will be sent at week 1 and week 5 of the study, taking approximately 5 minutes each.

Interested in participating? Click here to fill out a consent form and complete a sign-up survey.


We appreciate our community’s continued engagement and support in research. Together, we can play a role in helping improve knowledge of this disease and take steps to unlock better and more effective therapies and treatments.

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