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RESEARCH

Canadian PH Registry

The Canadian Pulmonary Hypertension Registry (CPHR) is an exciting and significant effort undertaken by Canada’s pulmonary hypertension community.

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What is the Canadian Pulmonary Hypertension Registry and why was it started?

The Canadian Pulmonary Hypertension Registry is a database of patient data collected to help better understand pulmonary hypertension (PH) and improve patient care. Data on the Canadian pulmonary hypertension population is lacking, especially for pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH), the rarest forms of pulmonary hypertension. This registry allows us to understand pulmonary hypertension and its impacts on patients better.

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Your participation is essential to the CPHR’s success

Your local pulmonary hypertension clinic team will have more information about the registry and how to sign up.

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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 for future research and quality improvement projects. We can use the data to advocate for more funding and resources in pulmonary hypertension patient care and to educate and promote awareness of PH.

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Your personal information is safe

You will never be identified individually. Your data will be grouped with other people’s data and used in reports, publications, and presentations.

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Learn more about the Canadian Pulmonary Hypertension Registry

Annual Report

CPHR Annual Report – January 2017 to June 2020

CPHR Annual Report – July 2020 to June 2021

CPHR Annual Report - July 2021 to June 2022

CPHR Annual Report – July 2022 to June 2023

CPHR Annual Report – July 2023 to June 2024

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What have we learned from the Canadian Pulmonary Hypertension Registry?

These academic articles all used data from the Canadian Pulmonary Hypertension Registry.

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Alquraishi H, Swiston JR, Lee L, Legkaia L, Norena M, Alobaidellah K, Kapasi K, Levy RD, Brunner NW. (2022)
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, San Francisco, CA.

https://www.abstractsonline.com/pp8/#!/10476/presentation/6476

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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. (2021)
Does community size or commute time affect the severity of illness at diagnosis or quality of care in a centralized care model of pulmonary hypertension? International Journal of Cardiology 332: 175-181.

https://doi.org/10.1016/j.ijcard.2021.03.035

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Budhram B, Spence E, Gardner A, Weatherald J, Swiston J, Legkaia L, Provencher S, Kemp K, Fox G, Foxall J, Chandy G, Hambly N. (2023)
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

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Cheung A, Marchand M, Kolkman L, Swiston J, Kapasi A, FRCPC, Brown M, Weatherald J, and Brunner NW. (2023)
Severity of Illness in Indigenous Patients with Pulmonary Arterial Hypertension in Canada. Abstract Poster, Vascular 2023 Conference, Oct.25-29, 2023, Montréal, Québec.

 

de Perrot M, Donahoe L, McRae K, Thenganatt J, Moric J, Chan J, McInnis M, Jumaa K, Tan KT, Mafeld S, Granton J, & Canadian CTEPH Working Group. (2022)
Outcome after pulmonary endarterectomy for segmental chronic thromboembolic pulmonary hypertension. The Journal of Thoracic and Cardiovascular Surgery 164(3): 696-707.
https://doi.org/10.1016/j.jtcvs.2021.10.078

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McBride A, Helmersen D, Hirani N, Thakrar M, Kularatne M, Liu J, Harper L, Iqbal H, Naser A, Varughese R, Weatherald J. (2022)
Validation of EmPHasis-10 health-related quality of life assessment tool in Canadian patients with pulmonary hypertension. European Respiratory Journal 2022 60(suppl 66): 2659.
https://doi.org/10.1183/13993003.congress-2022.2659

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Moghaddam N, Swiston JR, Tsang MYC, Levy R, Lee L, Brunner NW. (2021)
Impact of targeted pulmonary arterial hypertension therapy in patients with combined post-and precapillary pulmonary hypertension. American Heart Journal 235: 74-81.
https://doi.org/10.1016/j.ahj.2021.01.003

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Moghaddam N, Swiston JR, Weatherald J, Mielniczuk L, Kapasi A, Hambly N, Langleben D, Brunner NW. (2020)
Impact of saline loading at cardiac catheterization on the classification and management of patients evaluated for pulmonary hypertension. International Journal of Cardiology 306: 181-186.
https://doi.org/10.1016/j.ijcard.2019.11.104

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Ostad S, Sugarman J, Alkhodair A, Liang J, Mielniczuk LM, Hambly N, Helmersen D, Hirani N, Thakrar M, Varughese R, Norena M, Kularatne M, Swiston JR, Kapasi A, Weatherald J, Brunner NW. (2023)
Association Between the Pulmonary Artery Pulsatility Index and Prognosis in Pulmonary Arterial Hypertension: A Multicentre Study. CJC Open 5(7): 545-553.
https://doi.org/10.1016/j.cjco.2023.04.005

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Spence EEM, Budhram B, Helmersen D, Thakrar MV, Liu J, Hirani N, Kularatne M, Harper L, Weatherald J. (2023)
Evaluating the Transition from Parenteral Prostacyclin Therapy to Oral Selexipag Therapy in Pulmonary Arterial Hypertension: A Single-Center Retrospective Cohort Study. Canadian Respiratory Conference 2023, Montreal, Quebec.

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Sugarman J, Weatherald J, Thakrar M, Helmersen D, Hirani N, Varughese R, Liu J. (2020)
Pulmonary Artery Pulsatility Index as a Predictor of Mortality in Pulmonary Arterial Hypertension. CHEST 158(4): A2235 - A2236.
https://doi.org/10.1016/j.chest.2020.08.1906

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Weatherald J, Iqbal H, Mielniczuk L, Syed AR, Legkaia, L, Howard J, Dempsey N, Rader T, Swiston J, and Provencher S. (2023)
Priorities for pulmonary hypertension research: A James Lind Alliance priority setting partnership. Journal of Heart and Lung Transplantation 42(1): 1-6.
https://doi.org/10.1016/j.healun.2022.09.015

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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, and Mielniczuk L. (2022)
Mortality trends in pulmonary arterial hypertension in Canada: a temporal analysis of survival per ESC/ERS Guideline Era. European Respiratory Journal 59(6): A2101552.
https://doi.org/10.1183/13993003.01552-2021

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