The Child Neurology Society (CNS) endorses the proposal to establish additional ICD-10-CM codes for the neuronal ceroid lipofuscinoses (NCLs, Batten disease; ICD-10-CM E75.4). NCLs represent a group of progressive, devastating neurodegenerative disorders and are among the most prevalent causes of childhood neurodegeneration.
Updating and expanding ICD-10-CM coding to reflect current diagnostic standards and nomenclature will improve accuracy in diagnosis, case identification, disease surveillance, and epidemiologic research, while also supporting clinical research efforts and access to emerging precision therapies. CNS supports this resubmitted proposal led by the Batten Disease Clinical Centers of Excellence, a consortium coordinated by the Batten Disease Support, Research, & Advocacy Foundation, and joins the International Rare Diseases Research Consortium and the BDSRA Foundation in endorsing this important effort to advance care and research for children affected by NCLs.