Research Projects Funded 2007

2007 HHT Ongoing Research Grant Award

Mayo Clinic Team Leverages $50K HHT Foundation Research Award to $1 Million

Dr. Karen Swanson, D.O., Director of the Mayo Clinic HHT Center has been approved for funding from the Office of Orphan Products Development within the Food and Drug Administration (FDA) for an interferon protocol. Dr. Swanson's budget is now $1 million over three years. The study, entitled "Interferon-2B Treatment in Hereditary Hemorrhagic Telangiectasia," was directed towards determining whether interferon may provide a safe and effective treatment for HHT. A certain type of interferon has already been shown to have anti-angiogenic properties and is currently used in the treatment of infantile hemangiomas and liver hemangiomas. Both of these are diseases of abnormal blood vessel formation similar to the teleangiectases and AVMs that occur in HHT. To everyone who donated generously to the HHT Foundation so that we could provide that initial $50,000, without which the larger grant would never have been approved, we offer our wholehearted thanks on behalf of all of those with HHT. The Mayo Clinic HHT Center in Rochester, MN is actively recruiting/enrolling patients for this study who are between the ages of 18-70 and:

1. Are transfusion dependent, or
2. Have liver involvement with HHT and heart failure, or
3. Have diffuse lung involvement with low oxygen levels.

If you would like to see if you qualify to participate in this study, please contact Karen Swanson at the Mayo Clinic College of Medicine at (507) 266-0416.

David and Clara Bartley Jordan Epistaxis Research Grant Award
Dr. Jeff Hoag

This study is awarded to Dr. Jeffrey Hoag of Drexel University School of Medicine and will develop a uniform epistaxis severity scoring system. This system will be used to assess the effectiveness of specific treatments for HHT-related epistaxis. HHT-Epistaxis Severity Scores will help to validate current treatment algorithms, and serve as a benchmark for the development of future medical and surgical treatment strategies.

OUTCOMES: Dr. Hoag presented his research at the HHT Scientific Meeting held in Santander, Spain in 2009 and published his findings in the April 2010 edition of Laryngoscope. The Epistaxis Severity Scoring Tool developed by Dr. Hoag is used by ENT's at HHT Treatment Centers around the world to determine severity of nosebleeds and improvements realized from laryngology treatments, including the 2011 NOSE Study.

ESS Published Article - Laryngoscope 120: April 2010

Epistaxis Severity Scoring Tool (ESS)