UC San Diego Health System Launches First US CTEPH Registry

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PAH and specialized care centers

The University of California San Diego Health System, a leader in chronic thromboembolic pulmonary hypertension (CTEPH) research and patient care, has just received a generous grant to fund the recent launch of the country’s first CTEPH registry. The $7.6 million grant comes from pharmaceutical giant Bayer HealthCare in time for the November Pulmonary Hypertension Awareness Month. UC San Diego Health System is also known for being the first to offer pulmonary thromboendarterectomy (PTE), a life-saving, curative procedure for CTEPH, which is currently available in less than 10 facilities nationwide.

The US CTEPH registry was designed to be a centralized electronic database that will pool patient information from 30 sites across the country. The registry’s first goal is to collect information from at least 750 new diagnoses for the coming 6 years. Information in the registry will be made available to practicing clinicians, researchers, developers and members of the academe for a better understanding of the disease, treatment responses, and the improvement of CTEPH patient care.

Lead researcher, Kim Kerr, MD, who is a pulmonologist at UC San Diego Health System, explains that the number of CTEPH patients in the US remains severely undercounted, as this form of PH tends to present with non-distinct symptoms that are often misinterpreted as those of asthma or COPD. Through the new registry, obstacles to giving an accurate and timely CTEPH diagnosis can be identified, and treatment issues and trends can be followed.

According to co-investigator and cardiac surgeon Michael Madani, MD, who is also the chief of cardiothoracic surgery and director of UC San Diego Sulpizio Cardiovascular Center – Surgery, the CTEPH registry will also serve as a source of new learning for medical professionals and specialized centers. “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.”

Nick Kim, MD, a pulmonologist and the director of pulmonary vascular medicine at UC San Diego Health System, adds the registry will also facilitate doctors across the country to offer CTEPH patients more treatment options, as they will have easier access to updated information on what works for certain cases.

To find out more about pulmonary vascular medicine at UC San Diego Health System, log on to the center’s website at http://heartcenter.ucsd.edu.

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