Table 7.

Classic Ehlers-Danlos Syndrome: Recommended Surveillance

System/ConcernEvaluationFrequency
Skin Assessment for skin fragilityAt each visit or as needed
Joints/Pain Assessment for joint instability, occupational & physical therapy needs, mobility issues, pain
Neurologic Eval for hypotonia & motor developmentAt each visit in infants & children
Hematologic Assessment for easy bruising &/or prolonged bleedingAt each visit
Eval of clotting factors (platelet count, aPTT, PT, & thrombin time)If severe easy bruising is present
Cardiovascular EchocardiogramIn those w/normal initial echocardiogram:
  • Children: frequency of follow up per pediatric cardiologist
  • Adults: no follow-up echocardiogram necessary
In those w/abnormal echocardiogram (aortic dilatation, mitral valve prolapse): annually

aPTT = activated partial thromboplastin time; PT = prothrombin time

From: Classic Ehlers-Danlos Syndrome

Cover of GeneReviews®
GeneReviews® [Internet].
Adam MP, Feldman J, Mirzaa GM, et al., editors.
Seattle (WA): University of Washington, Seattle; 1993-2024.
Copyright © 1993-2024, University of Washington, Seattle. GeneReviews is a registered trademark of the University of Washington, Seattle. All rights reserved.

GeneReviews® chapters are owned by the University of Washington. Permission is hereby granted to reproduce, distribute, and translate copies of content materials for noncommercial research purposes only, provided that (i) credit for source (http://www.genereviews.org/) and copyright (© 1993-2024 University of Washington) are included with each copy; (ii) a link to the original material is provided whenever the material is published elsewhere on the Web; and (iii) reproducers, distributors, and/or translators comply with the GeneReviews® Copyright Notice and Usage Disclaimer. No further modifications are allowed. For clarity, excerpts of GeneReviews chapters for use in lab reports and clinic notes are a permitted use.

For more information, see the GeneReviews® Copyright Notice and Usage Disclaimer.

For questions regarding permissions or whether a specified use is allowed, contact: ude.wu@tssamda.

NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.