One of the most exciting and significant efforts undertaken by Canada’s pulmonary hypertension community in the last five years is the Canadian Pulmonary Hypertension Registry (CPHR). What is the CPHR and why was it started? The CPHR is a database of patient data collected to help better understand pulmonary hypertension (PH) and improve patient care. Data on the Canadian PH population is lacking, especially for the rarest forms of PH, PAH and CTEPH. This registry allows us to understand PH better and its impacts on patients. Your participation is essential to the success of CPHR Your local PH clinic team will have more information about the registry and how to sign up. Once you are signed up, you will not have to do anything extra. The registry will collect only the relevant data from your medical chart, allowing researchers to use the data collected for future research and quality improvement projects. We can use the data to advocate for more funding and resources in PH patient care. We can also use data to educate and promote awareness of PH. Your personal information is safe You will never be identified individually. Your data will be grouped with other data and used in reports, publications, and presentations. Learn more about the CPHR Frequently Asked Questions A National Registry for Canadian PH Patients, Part 1 (Connections, Fall 2018) A National Registry for Canadian PH Patients, Part 2 (Connections, Spring 2019) The Canadian Pulmonary Hypertension Registry: An Update (Connections, Winter 2022) Annual Report CPHR Annual Report - July 2021 to June 2022 What have we learned from the CPHR? The following academic articles all feature studies conducted using data from the Canadian PH Registry. Alquraishi H, Swiston JR, Lee L, Legkaia L, Norena M, Alobaidellah K, Kapasi K, Levy RD, Brunner NW. The Association Between Median Income and Severity of Pulmonary Hypertension at Diagnosis and Risk at Follow Up in a Public Health Care System. ATS 2022. https://www.abstractsonline.com/pp8/#!/10476/presentation/6476 Brunner NW, Legkaia L, Al-Ahmadi F, Lee L, Norena M, Lam CSM, Yim JJ, Luong C, Weatherald J, Nador RG, Levy RD, Swiston JR. Does community size or commute time affect severity of illness at diagnosis or quality of care in a centralized care model of pulmonary hypertension?, Int J Cardiol. 2021 Jun 1;332:175-181. https://doi.org/10.1016/j.ijcard.2021.03.035 Moghaddam N, Swiston JR, Tsang MYC, Levy R, Lee L, Brunner NW. Impact of targeted pulmonary arterial hypertension therapy in patients with combined post-and precapillary pulmonary hypertension. Am Heart J. 2021;235:74-81. https://doi.org/10.1016/j.ahj.2021.01.003 Moghaddam N, Swiston JR, Weatherald J, Mielniczuk L, Kapasi A, Hambly N, Langleben D, Brunner NW. Impact of saline loading at cardiac catheterization on the classification and management of patients evaluated for pulmonary hypertension. Int J Cardiol. 2020 May 1;306:181-186. https://doi.org/10.1016/j.ijcard.2019.11.104 Sugarman J, Weatherald J, ThakrarM, Helmersen D, Hirani N, Varughese R, Liu J. Pulmonary Artery Pulsatility Index as a Predictor of Mortality in Pulmonary Arterial Hypertension. CHEST, Volume 158, Issue 4, A2235 - A2236. https://doi.org/10.1016/j.chest.2020.08.1906 Zelt JGE, Sugarman J, Weatherald J, Partridge ACR, Liang J, Swiston J, Brunner B, Chandy G, Stewart DJ, Contreras-Dominguez V, Thakrar M, Helmersen D, Varughese R, Hirani N, Umar F, Dunne R, Doyle-Cox C, Foxall J, Mielniczuk L. Mortality trends in pulmonary arterial hypertension in Canada: a temporal analysis of survival per ESC/ERS Guideline Era. European Respiratory Journal Jan 2021, 2101552; DOI: https://doi.org/10.1183/13993003.01552-2021 Brandon Budhram, Emma Spence, Andrea Gardner, Jason Weatherald, John Swiston, Lena Legkaia, Steeve Provencher, Kristina Kemp, George Fox, Julia Foxall, George Chandy, Nathan Hambly. Transitioning Patients with Pulmonary Arterial Hypertension from Parenteral Prostacyclin Therapy to Oral Selexipag: A Multi-center Retrospective Case-Control Study. American Thoracic Society Conference 2023, Washington, D.C. https://www.atsjournals.org/doi/pdf/10.1164/ajrccm-conference.2023.207.1_MeetingAbstracts.A6447
What is the CPHR and why was it started? The CPHR is a database of patient data collected to help better understand pulmonary hypertension (PH) and improve patient care. Data on the Canadian PH population is lacking, especially for the rarest forms of PH, PAH and CTEPH. This registry allows us to understand PH better and its impacts on patients. Your participation is essential to the success of CPHR Your local PH clinic team will have more information about the registry and how to sign up. Once you are signed up, you will not have to do anything extra. The registry will collect only the relevant data from your medical chart, allowing researchers to use the data collected for future research and quality improvement projects. We can use the data to advocate for more funding and resources in PH patient care. We can also use data to educate and promote awareness of PH. Your personal information is safe You will never be identified individually. Your data will be grouped with other data and used in reports, publications, and presentations. Learn more about the CPHR Frequently Asked Questions A National Registry for Canadian PH Patients, Part 1 (Connections, Fall 2018) A National Registry for Canadian PH Patients, Part 2 (Connections, Spring 2019) The Canadian Pulmonary Hypertension Registry: An Update (Connections, Winter 2022) Annual Report CPHR Annual Report - July 2021 to June 2022 What have we learned from the CPHR? The following academic articles all feature studies conducted using data from the Canadian PH Registry. Alquraishi H, Swiston JR, Lee L, Legkaia L, Norena M, Alobaidellah K, Kapasi K, Levy RD, Brunner NW. The Association Between Median Income and Severity of Pulmonary Hypertension at Diagnosis and Risk at Follow Up in a Public Health Care System. ATS 2022. https://www.abstractsonline.com/pp8/#!/10476/presentation/6476 Brunner NW, Legkaia L, Al-Ahmadi F, Lee L, Norena M, Lam CSM, Yim JJ, Luong C, Weatherald J, Nador RG, Levy RD, Swiston JR. Does community size or commute time affect severity of illness at diagnosis or quality of care in a centralized care model of pulmonary hypertension?, Int J Cardiol. 2021 Jun 1;332:175-181. https://doi.org/10.1016/j.ijcard.2021.03.035 Moghaddam N, Swiston JR, Tsang MYC, Levy R, Lee L, Brunner NW. Impact of targeted pulmonary arterial hypertension therapy in patients with combined post-and precapillary pulmonary hypertension. Am Heart J. 2021;235:74-81. https://doi.org/10.1016/j.ahj.2021.01.003 Moghaddam N, Swiston JR, Weatherald J, Mielniczuk L, Kapasi A, Hambly N, Langleben D, Brunner NW. Impact of saline loading at cardiac catheterization on the classification and management of patients evaluated for pulmonary hypertension. Int J Cardiol. 2020 May 1;306:181-186. https://doi.org/10.1016/j.ijcard.2019.11.104 Sugarman J, Weatherald J, ThakrarM, Helmersen D, Hirani N, Varughese R, Liu J. Pulmonary Artery Pulsatility Index as a Predictor of Mortality in Pulmonary Arterial Hypertension. CHEST, Volume 158, Issue 4, A2235 - A2236. https://doi.org/10.1016/j.chest.2020.08.1906 Zelt JGE, Sugarman J, Weatherald J, Partridge ACR, Liang J, Swiston J, Brunner B, Chandy G, Stewart DJ, Contreras-Dominguez V, Thakrar M, Helmersen D, Varughese R, Hirani N, Umar F, Dunne R, Doyle-Cox C, Foxall J, Mielniczuk L. Mortality trends in pulmonary arterial hypertension in Canada: a temporal analysis of survival per ESC/ERS Guideline Era. European Respiratory Journal Jan 2021, 2101552; DOI: https://doi.org/10.1183/13993003.01552-2021 Brandon Budhram, Emma Spence, Andrea Gardner, Jason Weatherald, John Swiston, Lena Legkaia, Steeve Provencher, Kristina Kemp, George Fox, Julia Foxall, George Chandy, Nathan Hambly. Transitioning Patients with Pulmonary Arterial Hypertension from Parenteral Prostacyclin Therapy to Oral Selexipag: A Multi-center Retrospective Case-Control Study. American Thoracic Society Conference 2023, Washington, D.C. https://www.atsjournals.org/doi/pdf/10.1164/ajrccm-conference.2023.207.1_MeetingAbstracts.A6447