Introducing My ALS Decision Tool™ on Genetic Testing for People Living with ALS

Ashley RosenbrockFoundation Blog, Home Page

Launching today, the new My ALS Decision Tool™ on Genetic Testing is the first tool of its kind in the U.S. that focuses on genetic testing for anyone with ALS. It is designed to help people learn more about treatment options, how they may have developed ALS and whether they could qualify for genetic research opportunities.

Published alongside the new ALS & Genetics guide, this tool was developed in collaboration with people living with ALS, caregivers, advocates, researchers, and clinicians who are leading changes to clinical practice in ALS.

Previous clinical practice recommended that only people diagnosed with ALS who have a known family history with the disease should be offered genetic testing. However, clinical practice is changing, as genetic testing may help with making choices about ALS symptom management, clinical trials and other research studies.

“Clinical testing guidelines have changed, but the quality of information available to people living with ALS hasn’t caught up,” says Lauren Webb, LCSW, the Foundation’s Chief Advocacy and Outreach Officer. “We want to explain ALS genetic testing options in easy-to-understand language.”

My ALS Decision Tool™ on Genetic Testing can be someone’s first stop after an ALS diagnosis. Based on their answers, the tool will suggest resources and next steps. After using it, people will have a better understanding of the benefits of genetic testing – and the potential limitations, challenges and downsides as well.

Users will be better equipped to make informed decisions about whether to pursue testing in partnership with their ALS care team. The tool can help make clinic visits more focused and effective – enabling better, more informed conversations between clinicians and people living with ALS.

“This will be a great resource for people and families with ALS who have questions about genetics,” says Lisa M. Kinsley, MS, a certified genetic counselor at the Northwestern University Feinberg School of Medicine. “It helps guide people through a process they most likely have not been through before. It’s full of resources and suggestions for the whole timeline of testing – including the decision-making process and talking with your family about the results.”

Check out the new My ALS Decision Tool™ on Genetic Testing and ALS & Genetics guide today, and then explore modules on breathing and nutrition and other educational resources for people living with ALS.

My Decision Tool™ is made possible by generous donations from the Gilbert & Jacqueline Fern Foundation, Biogen, Cytokinetics Communications Fellowship Grant, Novartis Gene Therapies and other donors to the Les Turner ALS Foundation.