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Hopkins Survey: Developing Future Treatment for Nosebleeds

Cure HHT, in partnership with doctors at the Johns Hopkins Hospital HHT Center of Excellence, invites you to participate in a brief survey aimed at improving our ability to develop future therapies and drugs for nosebleed management.

Promising clinical trials for new therapies to help patients manage their nosebleeds are underway or in development. However, we need your assistance in fully understanding the needs and impact nosebleeds have on your wellbeing and quality of life. For example, some people experience nosebleeds that do not have significant impact on their lives, while others have bleeds that are extremely consequential.

Meaningfulness” is a term that is becoming quite important in how the FDA evaluates drugs for approval, and we share in the desire to prioritize the development of therapies that most positively impact our patients. Better understanding how you feel about nosebleeds and their impact on your life is a vitally important step in the process of developing and earning approval of new therapies.

The survey takes less than 3-minutes to complete, and asks questions that attempt to decide how the characteristics of your nosebleeds correlate with your impression of the bleeds.

We appreciate our community’s continued engagement 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.




Participation is fully voluntary and your responses will be anonymized. Participants must be at least 18 years old, have a confirmed clinical or genetic HHT diagnosis, and experience nosebleeds of any severity or regularity.
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