United States Chronic Thromboembolic Pulmonary Hypertension Registry

CHEST Journal ◽  
2015 ◽  
Vol 148 (4) ◽  
pp. 1008A
Author(s):  
Kim Kerr ◽  
William Auger ◽  
Michael Madani
Keyword(s):  
United States ◽  
Pulmonary Hypertension ◽  
Chronic Thromboembolic Pulmonary Hypertension ◽  
Thromboembolic Pulmonary Hypertension

scholarly journals An International Physician Survey of Chronic Thromboembolic Pulmonary Hypertension Management

2016 ◽  
Vol 6 (4) ◽  
pp. 472-482 ◽  
Author(s):  
Henning Gall ◽  
Ioana R. Preston ◽  
Barbara Hinzmann ◽  
Sabina Heinz ◽  
David Jenkins ◽  
...  
Keyword(s):  
United States ◽  
Pulmonary Hypertension ◽  
Treatment Guidelines ◽  
Chronic Thromboembolic Pulmonary Hypertension ◽  
The United States ◽  
Patient Record ◽  
Heart Catheterization ◽  
Referral Rates ◽  
Record Data ◽  
Thromboembolic Pulmonary Hypertension

We conducted an international study to evaluate practices in the diagnosis and management of patients with chronic thromboembolic pulmonary hypertension (CTEPH) globally across different regions. Between August and October 2012, CTEPH-treating physicians completed a 15-minute online questionnaire and provided patient record data for their 2–5 most recent patients with CTEPH. Overall, 496 physicians (Europe: 260; United States: 152; Argentina: 52; Japan: 32) completed the questionnaire and provided patient record data for 1,748 patients. The proportion of physicians who described themselves as working in or affiliated with a specialized pulmonary hypertension (PH) center ranged from 38% in France and Italy to 83% in the United States. A large proportion of patients did not undergo ventilation/perfusion scanning (46%–67%) or right heart catheterization (24%–57%) for the diagnosis of CTEPH. Referral rates for pulmonary endarterectomy evaluation ranged from 25% in Japan to 44% in Europe, with higher referral rates in PH centers; the main reasons for lack of referral were that surgery was not considered unless medical treatment was failing and patient refusal. Other variations in management included greater use of phosphodiesterase 5 inhibitors in the United States than in Europe and Japan and greater use of combination treatment in the United States than in Europe. Physicians' perceptions of their treatment strategy were generally consistent with patient record data. Results from this study, which includes a global aspect of CTEPH care, demonstrate not only regional differences in CTEPH management but, more importantly, considerable nonadherence to the diagnosis and treatment guidelines for CTEPH, even in PH centers.

scholarly journals United States Chronic Thromboembolic Pulmonary Hypertension Registry: Protocol Design (Preprint)

2020 ◽  
Author(s):  
Kim M. Kerr ◽  
C. Greg Elliott ◽  
Raymond L. Benza ◽  
Richard N. Channick ◽  
Kelly Chin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Risk Factors ◽  
Pulmonary Hypertension ◽  
Chronic Thromboembolic Pulmonary Hypertension ◽  
The United States ◽  
Thromboembolic Pulmonary Hypertension ◽  
Prospective Longitudinal ◽  
The U.S

BACKGROUND Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare sequela of acute pulmonary embolism that is treatable when recognized. Awareness of this disease has increased with recent advancements in therapeutic options, but delays in diagnosis remain common and diagnostic and treatment guidelines are often not followed. Data gathered from international registries has improved our understanding of CTEPH, but this data may not be applicable to the U.S. population due to differences in demographics and medical practice patterns. OBJECTIVE The U.S. CTEPH Registry (US-CTEPH-R) was developed to provide essential information to better understand the demographics, risk factors, evaluation, and treatment of CTEPH in the United States, as well as short and long-term outcomes of surgical and non-surgical therapies in the modern treatment era. METHODS Thirty sites throughout the United States enrolled 750 subjects in this prospective, longitudinal, observational registry of newly diagnosed CTEPH patients. Enrollment criteria included a mean pulmonary artery pressure > 25 mmHg by right heart catheterization and radiologic confirmation of CTEPH by a multi-disciplinary adjudication committee. Following enrollment, subjects were followed bi-annually until the conclusion of the study. Quality of life surveys were administered at enrollment and biannually, all other testing was at the discretion of the treating clinician. Details regarding surgical therapy, balloon pulmonary angioplasty and medical therapy were collected at enrollment and at follow-up as well as information related to health care utilization and survival. RESULTS Data from this registry will improve the understanding of the demographics, risk factors, and treatment patterns of CTEPH patients and the longitudinal impact of therapies on quality of life, healthcare utilization, and survival. CONCLUSIONS This manuscript details the methodology and design of the first large, prospective, longitudinal, registry of CTEPH patients in the U.S. CLINICALTRIAL ClinicalTrials.gov ID: NCT02429284

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