The American Academy of Neurology has published draft updates to the ALS Quality Measurement Set and is now accepting public comments to help inform the final updates.

First established in 2012, the ALS Quality Measurement Set helps to measure the extent to which people living with ALS are receiving health care consistent with the latest medical knowledge. The current update is the first since the measures were first adopted in 2012 and attempts to address gaps in care.

For example, in order to increase opportunities for people with ALS to access genetic counseling and testing, the working group who created the draft has proposed a new measure to determine what percentage of people with ALS are offered genetic testing in the context of genetic counseling.

Areas the working group identified to update are:  

• ALS supports and resources. 
• Genetic testing. 
• Disease modifying pharmacotherapy. 
• Clinical trials or expanded access.
• Screening for nutrition compromise and dysphagia. 
• Screening for respiratory impairment.
• ALS multidisciplinary care plan.
• ALS patient care preferences.

AAN ALS quality measures provide guidance and recommendations to health care providers, to ensure the most current information is available to provide the highest standard of care for individuals living with ALS.  

The deadline to submit public comments is January 25.