Research Studies

*Researchers/Physicians can submit their studies at the bottom of this page.

Research studies play a crucial role in advancing our understanding of inherited cardiac conditions and improving patient care.
These studies can include surveys, registries, observational studies, and more.
Types of Research Studies
Surveys: Collect information directly from patients and families about their experiences, symptoms, and treatment outcomes. This data helps researchers identify patterns and improve patient care.
Registries: Compile detailed information about patients diagnosed with specific conditions over time. These databases help track the natural history of diseases, treatment outcomes, and identify potential research areas.
Observational Studies: Monitor patients in their natural settings without intervention from researchers. These studies can provide insights and the real-world effectiveness of treatments.
Qualitative Research: Involves collecting non-numerical data, such as patient interviews or focus groups, to gain a deeper understanding of patient experiences, challenges and needs.
Research studies are vital for several reasons:
  • Improving Knowledge: By gathering data from diverse patient groups, researchers can uncover new information about inherited cardiac conditions.
  • Enhancing Care: Insights from research studies can lead to better diagnostic techniques, treatment plans, and patient support services.
  • Assessing Treatments: Observational studies and registries can help assess the long-term effectiveness and safety of existing treatments.
  • Supporting Policy and Practice: The findings from research studies can inform healthcare policies and clinical guidelines, ensuring patients recieve the best possible care.

Listed below are research studies that are currently recruiting participants. Please click on them to learn more.

Research Studies

University of Manitoba - Rady Faculty of Health Sciences

Survey: Experiences of Canadian Caregivers of Children with Rare Diseases

International Pediatric Brugada Registry

Patient Registry

For Researchers

If you are a researcher or physician interested in having your study featured in this section, please fill out this form to get in contact with us. Your research can help advance our understanding and treatment of inherited cardiac conditions.