Diseases can only be cured when scientists understand them. This understanding, which comes from basic research, leads to new drugs and treatments. The evaluation of new drugs and treatments, or the creation of new assessment tools, require patient participation. Without you, the advancement of a cure for HHT is impossible.
Dr. Jay Piccirillo, an Ear, Nose, and Throat doctor at the Washington University School of Medicine Hereditary Hemorrhagic Telangiectasia (HHT) Center of Excellence, and his research team are developing a new patient-reported outcome measure for HHT-related nosebleeds. His team needs your feedback on how nosebleeds create physical problems, functional limitations, and emotional consequences in your life. Their goal is to create a valid tool that can be used to evaluate the severity of HHT-associated nosebleeds and the impact of new nosebleed treatments.