Do you suffer from moderate to severe HHT related nosebleeds? If you answered YES, you may qualify to participate in an important research study now underway at a participating HHT Center.
Use our online tool, Epistaxis Severity Score (ESS), designed to help you and your doctors evaluate the most effective treatment for your nosebleeds. This tool was developed through a research grant funded by the HHT Foundation.
The purpose of the NOSE Study (North American Study of Epistaxis) is to carefully examine three nose sprays to see whether treatment with one of three investigational nose sprays may decrease the frequency of nosebleeds in patients with HHT. Each of these sprays will approach the problem from a different mechanism of action.
In order for this study to be successful, WE NEED YOU to participate, especially if you live near a participating HHT Center or can travel to a participating center. There are currently six HHT Treatment Centers recruiting patients throughout North America. The study will last for 24 weeks.
What is required of participants?
- Travel to a participating HHT Center twice - beginning of the study and then 12 weeks later.
- Be at least 18 years of age or older
- Completion of various written questionnaires and provision of blood samples three times - beginning of the study, 12 weeks later, and then 24 weeks later.
What are the benefits of participating?
- Participants can gain access to investigational treatments being studied for this condition. It is hoped that the information gained from this study may lead to a better understanding, management, and clinical outcomes for future patients affected with nosebleeds due to HHT.
To determine your eligibility, please call a research coordinator at a participating HHT Center. There are currently six participating:
Georgia Health Science University (Augusta, GA)
Johns Hopkins (Baltimore, MD)
Oregon Health Sciences University (Portland, OR)
University of California Los Angeles (Los Angeles, CA)
University of Utah (Salt Lake City, UT)
Washington University (St. Louis, MO)
As an added incentive, anyone who signs up to participate in the HHT Foundation sponsored NOSE Study between May 1, 2012 and September 1, 2012 will receive a free one-year membership with the Foundation. (Once you have completed the NOSE Study, please contact Mary Leigh Krock at 800-448-6389 in order for you to receive credit for a free year of membership).
The HHT Foundation has a considerable investment in launching this study on your behalf. Please consider participating. For more information on the NOSE Study, click here.
We hope that you will consider participating in this important HHT research.