Interconnected puzzle pieces forming a heart against the Canadian flag, symbolizing standardized CHD research.

Congenital Heart Disease Research: Why Standardizing Nomenclature in Canada Matters

Jordan Keane in Health & Wellness December 2025 • 4 min read.

"Discover how standardizing congenital heart disease nomenclature can improve research and patient outcomes across Canada."

Congenital heart disease (CHD), the most common type of birth defect, presents a significant challenge for healthcare systems worldwide. In Canada, while advancements in medical care have increased survival rates for individuals with CHD, the complexities of the disease and its varied presentations necessitate robust and standardized approaches to research and clinical practice.

The absence of a universally accepted nomenclature for CHD across Canadian institutions has created hurdles in data collection, analysis, and collaboration. This lack of standardization hinders the ability to conduct comprehensive, nationwide studies, limiting the potential to improve patient outcomes and inform healthcare policy effectively.

Recognizing this critical gap, a collaborative effort led by the Canadian Pediatric Cardiology Association (CPCA), the Canadian Adult Congenital Heart Network (CACH), and the International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD) is underway to promote the adoption of a standardized nomenclature for CHD across Canada. This initiative aims to streamline data collection, enhance research capabilities, and ultimately improve the lives of individuals affected by CHD.

Why Standardized Nomenclature Matters for CHD Research

Interconnected puzzle pieces forming a heart against the Canadian flag, symbolizing standardized CHD research.

Standardized nomenclature in congenital heart disease (CHD) research is essential for several reasons. It ensures that all healthcare professionals and researchers use the same language and definitions when describing heart conditions. This consistency is crucial for accurate data collection, analysis, and interpretation.

A lack of standardized nomenclature can lead to confusion, errors, and inconsistencies in research findings. Imagine a scenario where different hospitals use different terms to describe the same heart defect. When researchers try to combine data from these hospitals, they may struggle to accurately compare and analyze the information, leading to skewed results and unreliable conclusions.

Improved Data Accuracy: Standardized terms reduce ambiguity and ensure consistent data recording.
Enhanced Collaboration: Common language facilitates seamless collaboration among researchers and institutions.
Reliable Research Findings: Consistent data leads to more accurate and trustworthy research outcomes.
Better Patient Outcomes: Improved research translates into better understanding and treatment of CHD.

By adopting a standardized nomenclature, Canada can enhance its ability to conduct large-scale, multi-center studies on CHD. This will allow researchers to identify trends, evaluate the effectiveness of different treatments, and develop evidence-based guidelines for clinical practice. Ultimately, standardized nomenclature will contribute to improved patient outcomes and a better quality of life for individuals living with CHD.

The Future of CHD Research in Canada

The implementation of standardized nomenclature for CHD in Canada represents a significant step forward in improving the quality and impact of research. By fostering collaboration, enhancing data accuracy, and enabling comprehensive analysis, this initiative has the potential to transform the landscape of CHD research and ultimately improve the lives of individuals affected by this condition.

About this Article -

This article was crafted using a human-AI hybrid and collaborative approach. AI assisted our team with initial drafting, research insights, identifying key questions, and image generation. Our human editors guided topic selection, defined the angle, structured the content, ensured factual accuracy and relevance, refined the tone, and conducted thorough editing to deliver helpful, high-quality information.See our About page for more information.

This article is based on research published under:

DOI-LINK: 10.1016/j.cjca.2018.08.034, Alternate LINK

Title: Improving Quality Of Congenital Heart Disease Research In Canada: Standardizing Nomenclature Across Canada

Subject: Cardiology and Cardiovascular Medicine

Journal: Canadian Journal of Cardiology

Publisher: Elsevier BV

Authors: Marie J. Béland, Kevin C. Harris, Ariane J. Marelli, Lucile Houyel, Frédérique Bailliard, Frédéric Dallaire

Published: 2018-12-01

Everything You Need To Know

What is Congenital Heart Disease (CHD), and why is it a significant concern in Canada?

Congenital Heart Disease (CHD) refers to a range of heart defects present at birth, making it the most common type of birth defect. In Canada, it poses a significant challenge to healthcare systems. Despite advancements in medical care increasing survival rates, the disease's complexity and varied presentations necessitate robust and standardized approaches for research and clinical practice. The goal is to improve patient outcomes and inform healthcare policy effectively, due to the disease complexity.

What are the key challenges caused by the absence of a standardized nomenclature for CHD in Canada?

The absence of a universally accepted nomenclature for CHD across Canadian institutions creates several hurdles. It hinders data collection, analysis, and collaboration among healthcare professionals and researchers. This lack of standardization makes it difficult to conduct comprehensive, nationwide studies, ultimately limiting the potential to improve patient outcomes and inform healthcare policy effectively. Inconsistent terms across different hospitals and institutions can lead to confusion and errors in research.

How does standardized nomenclature improve data accuracy and research outcomes in CHD studies?

Standardized nomenclature ensures that all healthcare professionals and researchers use the same language and definitions when describing heart conditions, reducing ambiguity and ensuring consistent data recording. This consistency is crucial for accurate data collection, analysis, and interpretation. It allows researchers to accurately compare and analyze information from different sources, leading to reliable research findings. The implementation of a standardized nomenclature will enable researchers to identify trends, evaluate the effectiveness of treatments, and develop evidence-based guidelines for clinical practice.

Who are the key organizations involved in promoting standardized nomenclature for CHD in Canada?

A collaborative effort is underway, led by the Canadian Pediatric Cardiology Association (CPCA), the Canadian Adult Congenital Heart Network (CACH), and the International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD). These organizations are working together to promote the adoption of a standardized nomenclature for CHD across Canada, aiming to streamline data collection, enhance research capabilities, and improve the lives of individuals affected by CHD.

What are the long-term benefits of implementing standardized nomenclature for CHD research and patient care in Canada?

The implementation of standardized nomenclature for CHD in Canada has the potential to transform the landscape of CHD research. It will foster enhanced collaboration among researchers and institutions. It will enhance data accuracy leading to more trustworthy research outcomes and better patient outcomes. By improving the quality and impact of research, this initiative will contribute to improved patient outcomes and a better quality of life for individuals living with CHD. This includes the ability to conduct large-scale, multi-center studies and develop evidence-based guidelines for clinical practice, supporting long-term advancements in treatment and care.