No-Charge Genetic Testing for People Living with ALS and their Families.

Sponsored by Biogen and offered through Invitae, a genetic testing provider, ALS Identified is a no-charge genetic-testing program for amyotropic lateral sclerosis (ALS). The program will test for mutations in more than 20 genes that are linked to ALS.

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Eligibility

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:

PATIENTS: People who have been given a diagnosis of ALS.

FAMILY: People who do not have ALS but have a family history of ALS.

The importance of genetic testing for people with ALS and their families

Genetic testing may help you and your doctor have a deeper understanding of your ALS, providing you with more information about your diagnosis and...

May reveal if there is a genetic component that contributed to your developing 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 fast- or slow-progressing disease.

Provide information to help you make more informed life choices, including long-term care needs and family planning.

Reveal whether you may be a candidate for clinical trials that are studying specific genetic forms of ALS.

A genetic test may help you gain a deeper understanding of your ALS.

ALS Identified Program Features:

1

TALK TO YOUR DOCTOR

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.

2

TAKE THE TEST

Once your doctor decides to order, then your test kit will either be sent to your doctor’s office or sent to you at home.

  • If you take the test in the office, your doctor will take a small sample from you and send it to the lab. The sample taken to test for your DNA may be saliva, blood, or a buccal swab (a small stick or pad that is rubbed on the inside of your cheek to collect a few cells).
  • If you take the test at home, you will receive a sample collection kit in the mail. Follow the instructions included with the kit to provide a buccal swab or saliva sample and send it to the lab using the prepaid mailer provided.

3

YOUR RESULTS WILL BE SENT DIRECTLY TO YOUR DOCTOR IN 10 TO 21 DAYS

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 testing before getting tested.

Is genetic testing right for you and your family?

Before you get genetic testing, please consider the following:
  • Genetic testing can provide limited but important information about ALS. If you have ALS, the results may help to inform your prognosis. For family members without ALS, genetic testing may help to determine if they are at increased risk for developing ALS but it cannot predict when or if a person without ALS may develop the disease. 
  • The physical risks associated with genetic testing are small. 
  • Many of the risks associated with genetic testing involve the emotional, social, or financial consequences of the test results. People may feel confused, anxious, sad, or even guilty about their results. In some cases, genetic testing may create stress or strife within a family because the results can reveal information about other family members in addition to the person who is being tested. The possibility of genetic discrimination in employment, as well as for disability or life insurance, can also be a concern. 
  • Before choosing to undergo genetic testing, you should consider the implications of the results on your family members, your insurability for disability, health, and/or life insurance, as well as on family planning and reproduction choices. Future planning decisions in areas such as health care, advanced directives, estate and financial planning should also be considered. 
  • In addition to discussions with your doctor, a genetic counselor can further explain the benefits, risks, and limitations of genetic testing. It is important that you weigh these factors before deciding whether to undergo genetic testing at this time.

Do you have questions about genetic testing?

Read Frequently Asked Questions about genetic testing for people living with ALS and their families, or talk to your doctor.

A genetic test may help you gain a deeper understanding of your ALS.

Use this fact sheet about the ALS Identified genetic testing program to help you in your discussion with your doctor.

Brochure about the ALS Identified genetic testing program for people living with ALS and their families.

Fact sheet about the ALS Identified genetic testing program.

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.

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