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Severity Scores

 
For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Cornelia de Lange syndrome. 

Severity scoring procedures have been described to indicate the severity of CdLS. It should be noted that none of these procedures consider the severity of CdLS as experienced by families. Scoring procedures also do not estimate the severity of all organ systems that may be affected in CdLS.


Recommendation(s)

Severity Scores

R3
Presently available severity scoring schemes should be used cautiously as these do not adequately reflect the severity as experienced by the individuals with CdLS and their families.

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