CanadianPulmonary Hypertension Registry

Summary

Pulmonary hypertension (PH) is defined by high blood pressure in the lungs and can be caused by lung disease, heart or liver disease, genetic mutations and many other conditions. PH is a serious condition that causes breathlessness, leg swelling, fainting, heart failure, and death. Although certain types of PH can be treated with medications, most patients get worse over time and eventually need a lung transplantation or die from the disease. The main objective is to describe the clinical features, diagnostic workup, treatment strategies, risk profiles, and outcomes (such as need for hospitalization or death) of patients with PH in Alberta. A secondary objective is to develop a score that reflects the impact of other medical problems (defined as frailty) on quality of life, symptoms, exercise tolerance, and survival in patients with certain types of PH. A final objective is to identify gaps in patient care in Alberta for future quality improvement. We will establish a database of existing and newly diagnosed PH patients in Alberta. Information will be collected from the two PH clinics in Alberta located at the Peter Lougheed Centre in Calgary and at the University of Alberta Hospital in Edmonton. Information for local participants will be collected from clinic and hospital visits using questionnaires, chart reviews and doctor or nurse assessments of patients. For some specific research questions, our data will be combined with the McMaster PH program and Vancouver General Hospital PH program, an important first step towards the creation of a nation-wide PH database. Another aim of this project is to evaluate the impact of the accumulation of other medical conditions (frailty) on quality of life, symptoms and survival.