Clinical Guidance for People at Genetic Risk of ALS and FTD
Guidance for Clinical Management of Pathogenic Variant Carriers at Elevated Genetic Risk for ALS/FTD
In 2024, an international working group led by Drs. Michael Benatar and Terry Heiman-Patterson published guidance for health professionals caring for people with pathogenic variants associated with ALS and FTD. The review discusses genetic counseling, options for clinical monitoring, physical activity, diet, and other health considerations.
Clinical monitoring is an option for people who want it, and individual decisions should be made in consultation with qualified health professionals. This publication represents an important step toward more consistent, informed care for people at genetic risk.
ETL helped initiate and sponsor this work, participated in its development, and paid the open-access publication fee so that the guidance is freely available to everyone.