UC San Diego Health System is launching the first national chronic thromboembolic pulmonary hypertension (CTEPH) registry to improve healthcare practices and patient care for those with the disease, thanks to a $7.6 million grant.
CTEPH patients describe their condition like taking a deep breath through a drinking straw. The disease occurs due to complications of common blood clots, known as pulmonary embolisms. Reports indicate that 3.8 percent of those with first-time pulmonary embolism may eventually develop CTEPH. Thousands of patients develop this disease each year in the US.
This new project will allow physicians to follow CTEPH patients’ outcomes and learn more about the disease. The CTEPH registry, funded by Bayer Healthcare Pharmaceuticals, is an electronic and centralized database involving 30 sites across United States. The project aims to enroll 750 newly diagnosed patients over the next 6 years and will be managed by UC San Diego Health System.
Kim Kerr, MD and principal researcher at UC San Diego commented in a press release: “Currently, the number of patients in the United States with CTEPH is unknown. Because the symptom of shortness of breath is nonspecific, many CTEPH patients may be misdiagnosed as having more common diseases like asthma or COPD (…) Using data collected from the registry, we will identify barriers to patients receiving the correct diagnosis and treatment of their CTEPH. This registry will also allow us to assess the effectiveness of established and evolving therapies of this disease.”
The UC San Diego Health System is the pioneer of PTE surgery (pulmonary thromboendarterectomy). This procedure saves many lives through the removal of blood clots from the lungs. “The registry will serve as an educational tool for physicians and centers to learn more about the disease and its prognosis and outcomes, especially as it relates to surgical techniques used for PTE and the benefits to the patient. People from around the US suffering from CTEPH are referred to UC San Diego Health System for PTE but usually after discharge we do not have the resources to follow up long-term. Another critical part of the registry is that it will give us a more thorough understanding of how PTE truly improves a patient’s overall quality of life, even if they live 2,000 miles away,” said Michael Madani, MD, co-researcher and cardiac surgeon at the UC San Diego.
This registry will be key for physicians to better understand the disease. “Centers across the nation working as a team will not only help health providers improve their approach to CTEPH, it will ultimately give patients more options, knowledge and empowerment in how their disease is managed,” Nick Kim, pulmonologist at the UC San Diego, concluded.