ICD-10-CM is the standard transaction code set for diagnostic purposes under the Health Insurance Portability and Accountability Act (HIPAA). It is used to track health care statistics/disease burden, quality outcomes, mortality statistics and billing.
The process to receive an ICD-10 code is a process that takes around 2 years or more for some disorders, and since the process is bureaucratic some disorders can take longer or not gain approval . The Dup15q Alliance submitted the initial letter request to start the process. To date we have not received a response, but likely there are COVID related delays. If our first request is approved to start the process we will need to put together a committee to work towards putting together the documentation and testimonies needed in support of the utility of a diagnostic code for Dup15q Syndrome. If there are any parents interested in being put on the list to serve on that committee, please email me Vanessa.Vogelfarley@dup15q.org.
How you can help!
A big step towards documentation would be a successful clinical trial where Dup15q Syndrome is added as an indication for the treatment, additionally as many publications about Dup15q Syndrome are important. So, participation in the LADDER data collection (to publish updated characteristics of Dup15q, the genetic variations that lead to the syndrome, estimates on numbers of patients, etc., as well as participation in clinical trials are very important in the upcoming year for the Dup15q Community.
- Register for an account here: https://laddertotreatment.org/user/register.
- Check your email! You will receive a welcome email with a randomly generated password you can change once you sign in.
- Return to your account page https://laddertotreatment.org/user/account.
- Complete the Enrollment form.
- You are done! Thank you for enrolling in LADDER!