Canada Enrollment Registry

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The MAC Canada Enrollment Registry is a password-protected REDCap database housed on secure research servers at IWK Health which tracks enrollment at MAC sites across Canada.

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Mission and Function of the MAC Canada Enrollment Registry

The HRC supports data harmonization, quality control, genetic variant classification, and the integration of clinical and genomic information to improve risk stratification, surveillance, treatment planning, and clinical guidelines. Through secure data stewardship and regulatory compliance, the HRC enables scientific discovery and improves outcomes for individuals and families affected by HTAD worldwide.

The HRC maintains one of the world’s most comprehensive registries for inherited HTAD. Data received from MAC institutions include:

  • Demographics and family history
  • Clinical presentation and associated conditions
  • Aortic and arterial imaging across the lifespan
  • Surgical and medical management details
  • Outcomes such as aneurysm progression, dissections, and interventions
  • Genetic testing results and variant interpretation
  • Longitudinal follow-up, including cardiovascular events and survival

By compiling high-quality, standardized data from thousands of individuals, the HRC enables analysis that would be impossible at a single institution.

As an international collaboration, MAC relies on consistent data to ensure accuracy and reliability. The HRC ensures:

  • Standard definitions and coding of clinical variables
  • Verification of accuracy and internal consistency
  • Harmonization across differing hospital systems
  • Ongoing updates as new clinical or genetic information becomes available

This ensures that research conclusions are reliable and can be translated into clinical practice.

Genetics is central to understanding HTAD.

The HRC works with expert geneticists to:

  • Curate variant classifications following ACMG/AMP guidelines
  • Link genetic findings to phenotypic outcomes
  • Support research on gene-specific patterns of disease progression
  • Advance precision-medicine approaches tailored to each HTAD gene

This integration allows MAC to identify important differences in risk between genes, helping guide surveillance and treatment.

The Houston Registry Core uses secure research platforms such as REDCap for the storage and management of MAC data.

Its responsibilities include:

  • Preparing de-identified datasets for approved research projects
  • Ensuring compliance with IRB protocols, DUAs, and privacy regulations
  • Maintaining audit trails and documentation for all data use
  • Protecting patient confidentiality at all stages

This structure supports a transparent, ethical, and compliant research environment.

The HRC enables a broad range of research initiatives, including:

  • Gene-specific natural history studies
  • Analyses of surgical outcomes and postoperative complications
  • Assessment of sex-related differences in aortic events
  • Studies on vascular involvement beyond the aorta
  • Modeling of age-dependent risks and long-term clinical trajectories

The registry is essential for producing the high-impact publications and guidelines that help physicians care for patients more effectively.

Importance of the MAC Canada Enrollment Registry

For physicians, the HRC provides evidence that shapes surveillance recommendations, informs timing for elective aortic repair, and refines management strategies based on genotype.

For patients and families, the HRC represents a commitment to understanding their conditions more deeply, improving early diagnosis, and advancing personalized care rooted in scientific evidence.

Participation from patients around the world is what makes the HRC possible. Their contributions drive discoveries that ultimately lead to safer, more effective approaches to preventing aortic complications.