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Sponsored by Biogen and offered through Invitae, a genetic testing provider, ALS Identified is a no-charge genetic testing program for amyotrophic lateral sclerosis (ALS). The program will test for mutations in more than 20 genes that are linked to ALS.
Individuals 18 years of age or older in the US and Puerto Rico with a clinical diagnosis or family history of ALS will be eligible to participate in the program. This includes:
People who have been given a diagnosis of ALS.
People who do not have ALS but have a family history of ALS.
Genetic testing may help you and your doctor have a deeper understanding of your ALS, providing you with more information about your diagnosis:
May reveal if there is a genetic component to your ALS.
Help family members understand if they may be at risk for ALS as well.
May provide information as to whether the mutation(s) present are associated with the rate of progression of the disease.
Provide information to help you make more informed life choices, including long-term care needs and family planning.
Learnings from ongoing clinical trials may help inform clinical care.
Only a healthcare professional can order a genetic test through the program. So, speak with your doctor to discuss if this is right for you.
Once your doctor decides to order a test, then your test kit will either be sent to your doctor’s office or sent to you at home.
Your doctor will discuss the results with you, and you can then ask your doctor to give you direct access to your test results through the ALS Identified website.
Genetic counseling is recommended for anyone getting a genetic test for ALS. A genetic counselor specializes in helping people understand their genetics. Before testing, the genetic counselor can discuss the potential risks and benefits of genetic testing. After testing, they can help you understand the results and answer questions about how the results might impact you, your family, and family planning.
Talk to your doctor about genetic counseling before getting tested.
Before you get genetic testing, please consider the following:
Sponsored by Biogen and offered
While third parties and commercial organizations may provide financial support for this program, tests and services are performed by Invitae. Healthcare professionals must confirm that patients meet certain criteria to use the program. Genetic testing is available in the US only. Healthcare professionals and patients who participate in this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use or support any other products or services from Invitae or from third parties or commercial organizations.