Project Grant UP446404

HEREDITARY HEMORRHAGIC TELANGIECTASIA (HHT) PROGRAM - HEREDITARY HEMORRHAGIC TELANGIECTASIA (HHT) IS A RARE GENETIC DISORDER THAT RESULTS IN THE DEVELOPMENT OF ABNORMAL BLOOD VESSELS. THESE VESSEL MALFORMATIONS ARE PRONE TO BLEEDING AND CAN BE FOUND THROUGHOUT THE BODY'S MULTIPLE ORGAN SYSTEMS. DUE TO ITS SYSTEMIC AND COMPLEX NATURE, HHT PATIENTS OFTEN EXPERIENCE DELAYED DIAGNOSIS AND BARRIERS TO ACCESSING MEDICAL TEAMS WITH HHT EXPERTISE. THESE FACTORS COMPOUND IN A WAY THAT BURDENS THE HHT COMMUNITY BY INCREASING MORTALITY. THE GOALS OF THIS PROGRAM ARE TWO-FOLD: 1) DEVELOP A DE-IDENTIFIED, AGGREGATE DATA COLLECTION REGISTRY TO BETTER UNDERSTAND HHT TREATMENT AND OUTCOMES AND 2) EXPAND ACCESS TO AND COORDINATION OF CARE FOR HHT PATIENTS. WE WILL ACHIEVE THESE GOALS BY WORKING WITH 15 GEOGRAPHICALLY DIVERSE HHT CENTERS OF EXCELLENCE ACROSS THE UNITED STATES WHO ARE COMMITTED TO THIS PROGRAM. THE PARTNER CENTERS WILL EACH ENTER DATA INTO THE LONGITUDINAL OUTCOMES REGISTRY AND WILL PARTICIPATE IN EXPANSIVE EDUCATIONAL OUTREACH. WE WILL FORM A NATIONAL CENTER TO COORDINATE THESE EFFORTS, SUPPORT THE REGISTRY WITH BOTH TECHNICAL AND SCIENTIFIC SUPPORT, AND DEVELOP ENDURING EDUCATIONAL CONTENT TO INCREASE THE KNOWLEDGE OF HHT IN MEDICAL PROVIDERS ACROSS THE UNITED STATES.