CDKL5 Deficiency Receives ICD-10-CM code: G40.42

ICD-10-CM code for CDD Approved!

Together with the Loulou Foundation and the directors of the CDKL5 Centers of Excellence, we submitted a proposal for the creation of a new ICD-10-CM code for CDKL5 Deficiency Disorder (CDD) that was reviewed during the September 11 meeting and is currently receiving comments until November 8, 2019. It is a pleasure to announce that the application to create a new ICD-10-CM code for CDD: G40.42 Cyclin-Dependent Kinase-Like 5 Deficiency Disorder, CDKL5 was approved.

The previous ICD codes did not adequately capture the multisystem aspects of CDD. As such, CDD coding has historically been inconsistent, leading to poor prevalence and mortality tracking, and difficulty accessing services for caregivers. CDD is unique, is not a subset of other syndromes and should not be considered in other codes. The directors of the 8 IFCR-funded CDKL5 Centers of Excellence and leading medical organizations were consulted during the preparation of the proposal. Letters were also submitted from the American Epilepsy Society, the American Academy of Neurology, the American Academy of Pediatrics, Child Neurology Foundation, and the National Organization of Rare Diseases supporting the application for a new ICD-10-CM code for CDD. IFCR is grateful for the support from the medical and advocacy community.

The new ICD-10-CM code for CDKL5 Deficiency Disorder will improve clinical care by ensuring appropriate access to services and treatments and will improve research and future treatment opportunities by accurately tracking patient numbers. CDD required its own code to ascertain who these patients are and what their risks are. Importantly, CDD required its own code to move treatments forward.

Read the press release here.