Pulmonary Vascular Disease |

United States Chronic Thromboembolic Pulmonary Hypertension Registry FREE TO VIEW

Kim Kerr, MD; William Auger, MD; Michael Madani, MD
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University of California San Diego, San Diego, CA

Chest. 2015;148(4_MeetingAbstracts):1008A. doi:10.1378/chest.2260222
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SESSION TITLE: Venous Thromboembolism Posters

SESSION TYPE: Original Investigation Poster

PRESENTED ON: Wednesday, October 28, 2015 at 01:30 PM - 02:30 PM

PURPOSE: Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare, life-threatening condition that represents the most severe long-term complication of acute pulmonary embolism. Yet the symptoms of CTEPH, which include exercise intolerance, fatigue, and dyspnea, are nonspecific. As such, CTEPH may be underdiagnosed in patients presenting with such symptoms or may be misdiagnosed as pulmonary arterial hypertension (PAH) due to a lack of disease awareness. CTEPH is the only form of PH that is potentially curable, and only with pulmonary thromboendarterectomy (PTE), so it is critical that it be appropriately diagnosed. Patient registries have recently described the epidemiology of CTEPH in European populations, but the epidemiology and demographics of CTEPH have yet to be adequately described in the US population.

METHODS: A US registry was established to gain greater understanding of the prevalence, pathophysiology, evaluation, and treatment of patients with CTEPH. The US CTEPH Registry is a multicenter, observational, US-based study of the clinical course and treatment of patients diagnosed with CTEPH. Consenting patients with a diagnosis of CTEPH within the past 6 months will be enrolled at 30 participating study sites.

RESULTS: Baseline data, including but not limited to prior treatment with PAH-specific and other medications, time of CTEPH diagnosis, diagnostics used to confirm CTEPH, and details of prior thromboembolic history will be collected. Demographics, medical history, hemodynamics, and radiographic imaging of eligible patients will be reviewed to confirm CTEPH diagnosis. Confirmed CTEPH patients will be followed longitudinally in the registry, and treatment data will be collected. Other data points include WHO functional class, SF-36 scores, six-minute walk distance, hemodynamic changes, and occurrence of PTE, hospitalizations, and death.

CONCLUSIONS: Long-term follow up of confirmed CTEPH patients will help identify predictors of successful surgical outcomes and evaluate pharmacologic nonsurgical therapy in inoperable CTEPH patients.

CLINICAL IMPLICATIONS: Establishment of clinical outcome indicators based on response to surgical and nonsurgical CTEPH treatment will increase the quality of patient care and overall patient quality of life.

DISCLOSURE: Kim Kerr: University grant monies: ACCP 2013 and 2014 development of self-study stations, Grant monies (from industry related sources): Bayer Healthcare ISS grant, Other: Bayer Healthcare PI, Other: Actelion PI, Consultant fee, speaker bureau, advisory committee, etc.: Bayer Healthcare, Consultant fee, speaker bureau, advisory committee, etc.: University of Pennsylvania William Auger: Grant monies (from industry related sources): Bayer Healthcare Sub-investigator Michael Madani: Consultant fee, speaker bureau, advisory committee, etc.: Bayer Healthcare, Grant monies (from industry related sources): Bayer Healthcare primary investigator

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