Severity Scores

Severity Scores

Severity scoring procedures have been described to indicate the severity of CdLS (²,¹⁰,¹¹,¹²). 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.

The International CdLS Consensus Group suggests current severity scoring schemes should be used cautiously. The group acknowledges the need for the development of a severity score that represents severity as experienced by families (R3).