Description
The purpose of the Hereditary Hemorrhagic Telangiectasia (HHT) Center Program is to reduce illness and death related to HHT by partnering with clinical centers to expand access and coordination of care, creating innovative strategies to support clinicians in identifying and diagnosing HHT cases, and developing a de-identified, aggregate patient data registry to better understand this rare disease and its treatment outcomes. The program aims to achieve several objectives, including increasing the percentage of patients seen by a multidisciplinary HHT team, entering data into a national HHT patient registry, and participating in continuous quality improvement projects. The program will also establish an HHT Network of Clinical Centers, develop and maintain a national HHT patient data registry, and implement EHR enhancements.
• Partnering with at least 15 clinical centers to expand access and coordination of care for HHT patients
• Leading clinical centers in quality improvement projects to improve quality of life for individuals with HHT
• Developing a de-identified, aggregate patient data registry to better understand HHT and treatment outcomes
• Piloting an EHR enhancement alert system to assist with identifying and diagnosing potential HHT patients
• Providing ongoing education and technical assistance to clinicians
• Creating and implementing a communication and collaboration plan