Resources for Clinicians and Medical Professionals
Loeys-Dietz syndrome (LDS) is a genetic connective tissue disorder with multisystem involvement and variability in the type and severity of manifestations. It is best monitored and treated by a multidisciplinary team.
For more educational resources, visit the patient information section of our website.
Resource Directory for Loeys-Dietz Syndrome
Features are described by body system, symptoms, diagnostic test, treatment, and more.
Discusses clinical characteristics, diagnosis and genetic counselling, management, activities and medication to avoid, risk for family members, and pregnancy.
A Report of the American Heart Association/American College of Cardiology Joint Committee on Clinical Practice Guidelines.
Guidelines for LDS imaging, medical therapy, surgical thresholds and considerations, pregnancy, cardiac rehabilitation, shared decision making, multidisciplinary teams, and more.
Discusses pregnancy, delivery, and postpartum care, anaesthesia, aortic dissection, physical activity, retinal detachment, contraindicated medication, emergencies, allergies, and anaphylactic shock.
Guidelines for evaluation, imaging, medical therapy, exercise and activity, and surgical intervention for LDS, Marfan syndrome, vEDS and other hereditary aortic disorders in children.
Heritable thoracic aortic disease (HTAD) accounts for approximately 20-25% of all thoracic aortic aneurysms and dissections.
A point-of-care tool with clinical and genetic information on the following genes: TGFBR1, TGFBR2, TGFB2, SMAD3, ACTA2, PRKG1, MYLK, and MYH11.
Aortic Root Z-score Calculator for Children
Aortic Root Z-score Calculator for Adults
Vertebral Tortuosity Index
Aortic Size Index
Maximum aortic size divided by surface area
Clinical Scoring System for Early Onset (Neonatal) Marfan syndrome
Comparative Risks of Initial Aortic Events Associated With Genetic Thoracic Aortic Disease
Cardiovascular Outcomes in Aortopathy: GenTAC Registry of Genetically Triggered Aortic Aneurysms and Related Conditions
Aortic Dimensions in Turner syndrome
Aortic Cross-Sectional Area/Height Ratio
This paper provides an updated overview of effective management practices since the first LDS primer in 2014. It aims to enhance clinical awareness, inform healthcare providers, and improve patient outcomes through individualized care strategies for those living with LDS.
This database brings together clinical recommendations drawn from the scientific literature and expert consensus on various heritable connective tissue disorders (HCTDs), including Ehlers-Danlos syndrome, Marfan syndrome, and Loeys-Dietz syndrome. Its purpose is to facilitate access to existing recommendations in order to support people living with an HCTD, their caregivers, healthcare professionals, and researchers.
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