そして、アメリカでも日本と同じように肢帯型筋ジストロフィーの医療コード・診断コードは筋ジストロフィーに含まれています。それを、患者が個人の診断にマッチした特定のLGMD医療コードを与えられるように変更しようとしています。メリットは、 患者に正確な医療を届け臨床試験と標的治療への今後のアクセスを改善する可能性があるからです。「LGMD Awareness Foundation」は他の団体と共に「Centers for Disease Control and Prevention (CDC)」に特定のLGMD診断コードを追加するよう請願書を提出したそうです。
Do you live in the US? 💚 We need your help 💚 Please sign the petition!
LGMD Awareness Foundation has been working with MDA and other LGMD foundations to develop diagnostic codes specific to LGMD. Currently, anyone diagnosed with LGMD is classified using “Other Muscular Dystrophy” as the diagnostic code in their medical records.
As part of the process to add these new LGMD specific diagnostic codes, the Centers for Disease Control and Prevention (CDC) is accepting feedback until May 10th. One way to make your voice heard is to sign our petition. (It will only take a couple minutes of your time.)
Why is this important? Though this change might seem small and technical, if enacted, it would have significant benefits for the LGMD community, from potentially shortening the diagnosis timeline patients face, to delivering precise medical care, to improving clinical trials and future access to targeted treatments.
Having medical codes accurately capture the various subtypes of LGMD may seem like a small change, but it is one that will have a significant impact for people living with these conditions. It is a necessary change, as we are getting closer to the day when clinical trials will become available for those living with LGMD. And with these codes in place, we can better understand the size of the LGMD patient population, and more easily identify who is eligible for these potentially transformative therapies.