Knowledge Translation
- Research & Registry
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- Knowledge Translation
Transforming scientific discovery into meaningful outcomes for patients and families is central to MAC’s mission. By prioritizing knowledge translation, MAC ensures its research reaches beyond academic journals to the clinicians, researchers, guideline committees, and families who need it most.
Through open communication, shared scientific leadership, and strong partnerships, MAC continues to advance care and understanding for individuals affected by Hereditary Thoracic Aortic Disease (HTAD) worldwide.
The application of genetic testing and precision medicine impacts patient care through:
- Earlier detection
- More precise monitoring
- Better-timed surgical interventions
- Reduced risk of aortic dissection
- Improved long-term survival
- Decreased morbidity, better quality of life
Guillaume Jondeau, MD, PhD, FESC, FACC
MAC Executive Committee Clinical Chair
Professor of Cardiology
Director, Centre de Référence sur le syndrome de Marfan et Apparentés
Claude Bichat-Claude Bernard Hospital
Assistance Publique Hôpitaux de Paris
University Paris Cité
Paris, France
Dr. Guillaume Jondeau shares how MAC’s collaborative registry transformed clinical understanding of Heritable Thoracic Aortic Disease. As lead author of one of the consortium’s earliest studies, he describes how data collected across participating centres generated evidence that now informs international guidelines and helps clinicians provide better care for patients and families.
The Consortium shares its findings through:
MAC disseminates data through peer-reviewed publications and contributes to international guidelines that establish standards for the diagnosis and management of HTAD.
International Meetings and Summits:
MAC’s scientific summits and working groups provide forums for sharing emerging results, refining research priorities, and accelerating innovation.
Collaboration with Patient Organizations:
MAC works closely with patient organizations by sharing information, offering educational webinars, and serving as a trusted resource for patients and families.
Education and Capacity Building:
By sharing data and best practices across institutions, MAC strengthens the ability of clinical teams worldwide to effectively diagnose and treat genetic aortic disorders.