Houston Registry Core

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The Houston Registry Core (HRC) is one of the principal data and biospecimen centers of MAC. Based at McGovern Medical School at UTHealth Houston, the HRC manages the collection, organization, and secure storage of clinical and genetic data contributed by participating MAC sites worldwide. Its overarching mission is to support collaborative research that improves diagnosis, risk stratification, and management of Heritable Thoracic Aortic Disease (HTAD) and related vascular disorders.

Mission and Function of the 
Houston Registry Core

1. Centralized Registry for Global Data

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.

2. Data Harmonization and Quality Control

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.

3. Integration of Genetic and Clinical Information

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.

4. Secure and Responsible Data Stewardship

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.

5. Supporting Scientific Discovery Across MAC

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 Houston Registry Core

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.