{"id":10040,"date":"2026-04-23T10:01:31","date_gmt":"2026-04-23T14:01:31","guid":{"rendered":"https:\/\/loeysdietzcanada.org\/?page_id=10040"},"modified":"2026-10-15T16:35:37","modified_gmt":"2026-10-15T20:35:37","slug":"ressources-cliniciens","status":"publish","type":"page","link":"https:\/\/loeysdietzcanada.org\/fr\/ressources-cliniciens\/","title":{"rendered":"Cliniciens"},"content":{"rendered":"\t\t
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Ressources pour les cliniciens et professionnels de la sant\u00e9<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Le syndrome de Loeys-Dietz<\/strong> (SLD)<\/strong> est une maladie g\u00e9n\u00e9tique du tissu conjonctif avec une\u00a0atteinte multisyst\u00e9mique et une variabilit\u00e9 dans le type et la s\u00e9v\u00e9rit\u00e9 des manifestations. Ce\u00a0syndrome est mieux suivi et trait\u00e9 par une \u00e9quipe multidisciplinaire.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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R\u00e9pertoire des ressources pour le syndrome de Loeys-Dietz<\/b><\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Head-to-Toe of Features Observed in Loeys-Dietz Syndrome<\/span><\/div>

Features are described by body system, symptoms, diagnostic test, treatment, and more.<\/p>



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Head-to-Toe Features of LDS<\/span>
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Article: Loeys-Dietz Syndrome (2018), by Dr. Bart Loeys and Dr. Harry Dietz<\/span><\/div>

Discusses clinical characteristics, diagnosis and genetic counselling, management, activities and medication to avoid, risk for family members, and pregnancy.<\/p>



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GeneReviews: Loeys-Dietz Syndrome<\/span>
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2022 ACC\/AHA Guideline for the Diagnosis and Management of Aortic Disease<\/span><\/div>

A Report of the American Heart Association\/American College of Cardiology Joint Committee on Clinical Practice Guidelines.<\/p>

Guidelines for LDS imaging, medical therapy, surgical thresholds and considerations, pregnancy, cardiac rehabilitation, shared decision making, multidisciplinary teams, and more.<\/p>



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AHA\/ACC Clinical Practice Guidelines<\/span>
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VASCERN Do\u2019s and Don\u2019ts for Situations Frequently Faced by Loeys-Dietz Syndrome Patients<\/span><\/div>

Discusses pregnancy, delivery, and postpartum care, anaesthesia, aortic dissection, physical activity, retinal detachment, contraindicated medication, emergencies, allergies, and anaphylactic shock.<\/p>



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VASCERN LDS Do’s and Don’ts<\/span>
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2024 AHA Guideline for Management of Aortopathy in Children<\/span><\/div>

Guidelines for evaluation, imaging, medical therapy, exercise and activity, and surgical intervention for LDS, Marfan syndrome, vEDS and other hereditary aortic disorders in children.<\/p>



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AHA Pediatric Guidelines<\/span>
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Genetics Guide on HTAD - GECKO<\/span><\/div>

Heritable thoracic aortic disease (HTAD) accounts for approximately 20-25% of all thoracic aortic aneurysms and dissections.<\/p>



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GDD: Heritable Thoracic Aortic Disease<\/span>
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UTHealth Genomic Medicine Guidance Application<\/span><\/div>

A point-of-care tool with clinical and genetic information on the following genes: TGFBR1, TGFBR2, TGFB2, SMAD3, ACTA2, PRKG1, MYLK, and MYH11.<\/p>



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CVGenomics Point-of-Care Tool<\/span>
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Cardiovascular Risk Calculators\u200b<\/span><\/div>
Aortic Root Z-score Calculator for Children<\/h5>


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Parameterz<\/span>
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CCPCRN Z-Score<\/span>
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Pediatric Heart Network Z-Score<\/span>
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Boston Z-Score Calculator<\/span>
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Aortic Root Z-score Calculator for Adults<\/h5>


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Parameterz<\/span>
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Boston Z-Score Calculator<\/span>
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Vertebral Tortuosity Index<\/h5>


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Morris et al.<\/span>
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Aortic Size Index<\/h5>

Maximum aortic size divided by surface area<\/p>



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Read Article<\/span>
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Clinical Scoring System for Early Onset (Neonatal) Marfan syndrome<\/h5>


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Zarate et al.<\/span>
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Comparative Risks of Initial Aortic Events Associated With Genetic Thoracic Aortic Disease<\/h5>


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Regalado et al.<\/span>
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Cardiovascular Outcomes in Aortopathy: GenTAC Registry of Genetically Triggered Aortic Aneurysms and Related Conditions<\/h5>


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Holmes et al.<\/span>
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Aortic Dimensions in Turner syndrome<\/h5>


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Quezada et al.<\/span>
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Parameterz<\/span>
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Aortic Cross-Sectional Area\/Height Ratio<\/h5>


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Masri et al.<\/span>
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General Information on Loeys-Dietz Syndrome\u200b<\/span><\/div>

Information on our website.<\/h4>


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Signs and symptoms<\/span>
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Diagnostic criteria and process<\/span>
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Treatment and monitoring<\/span>
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Genetics and LDS types 1-6<\/span>
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Differences between LDS and other disorders<\/span>
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Resources For Your Patients<\/span><\/div>


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Family Planning with LDS<\/span>
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LDS Emergency Preparedness<\/span>
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Differences Between LDS and Other Connective Tissue Disorders<\/span>
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Emergency Alert Card<\/span>
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LDS School Packet<\/span>
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Virtual Patient Group<\/span>
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LDSFC Blog<\/span>
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1 – on – 1 Patient Support<\/span>
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Loeys-Dietz Syndrome: 2026 updated care management primer<\/span><\/div>

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.<\/p>



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Updated LDS Management Primer<\/span>
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<\/i><\/span><\/i><\/span>Clinical Recommendations Database for Heritable Connective Tissue Disorders (HCTDs)<\/span><\/div>

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.<\/p><\/div>\n\t\t\t\t\t<\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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La Fondation ne fournit pas de services sociaux, m\u00e9dicaux ou de sant\u00e9, et n’est pas responsable des services m\u00e9dicaux ou autres services recommand\u00e9s fournis par des tiers.

Cette page offre un aper\u00e7u du R\u00e9pertoire des ressources. Pour obtenir de plus amples renseignements ou pour ajouter une ressource au r\u00e9pertoire, veuillez communiquer avec la Fondation.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

Ressources pour les cliniciens et professionnels de la sant\u00e9 Le syndrome de Loeys-Dietz (SLD) est une maladie g\u00e9n\u00e9tique du tissu conjonctif avec une\u00a0atteinte multisyst\u00e9mique et une variabilit\u00e9 dans le type […]<\/p>\n","protected":false},"author":5,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"full-width-container","site-content-style":"unboxed","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"TEC\\Tickets\\Commerce\\Module","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":"","_tec_slr_enabled":"","_tec_slr_layout":""},"class_list":["post-10040","page","type-page","status-publish","hentry"],"aioseo_notices":[],"aioseo_head":"\n\t\t\n\t\n\t\n\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t