In Slide 19 of this week’s presentation, reference is made to a Phelan McDermid syndrome (PMS) ICD code and also to the US ADDM.
An ICD code is a classification that is used in a patient’s medical record - in this case, it identifies a specific diagnosed condition. The code is designated by the US National Center for Health Statistics and is used universally between clinicians to track data associated with a specific diagnosis.
PMS only received its own unique ICD code this year and it came into effect on 1 October. Prior to this, PMS was lumped into general categories along with other disorders. Designation of an ICD code for a condition isn’t automatic; it happens as a result of a specific patient advocacy group applying and then completing a long and challenging process. Rett syndrome, Angelman syndrome and Prader-Willi syndrome have all now been designated unique ICD codes.
Having a unique ICD code is useful for multiple purposes, such as counting the US patient population for a particular condition, cataloguing the economic burden of the condition to argue for better support, recruiting patients for clinical trials, providing drug developers with information needed to launch a drug program and assisting with insurance claims.
The ICD code is also used by The Autism and Developmental Disabilities Monitoring (ADDM) Network, a program funded by the US Centres for Disease Control and Prevention (CDC) to collect data to better understand the number and characteristics of children with autism spectrum disorder (ASD), cerebral palsy (CP) and other developmental disabilities living in different areas of the United States. There are 16 ADDM Network sites spread across the United States.
Currently, the ADDM Network is tracking more than 220,000 8-year-old children and 220,000 4-year-old children across the United States and is expanding its network to a 16-year-old cohort.
Suffice to say that the recent designation of a unique ICD code for PMS is not only good news for the US PMS community, but also for Neuren
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https://pmsf.org/icd-code/#:~:text=...both primary,as autism spectrum disorder (F84.
https://www.fpwr.org/blog/pws-receives-specific-disease-code-to-track-medical-care-and-outcomeshttps://www.cdc.gov/ncbddd/autism/addm-community-report/addm-network-methods.html
(20min delay)