No-charge genetic testing for patients living with ALS and their families

The ALS Identified Program—sponsored by Biogen and offered through Invitae—facilitates access to genetic testing at no charge to your patients.

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Genetic testing / No-charge genetic testing program

6 min read

The importance of considering genetic testing in ALS

Individuals with a clinical diagnosis of ALS and their family members may benefit from genetic testing.1

  • Genetic testing for patients diagnosed with ALS may help provide a better understanding of their condition, may help inform life choices, including family planning, and may provide information as to whether the mutation(s) present are associated with fast- or slow-progressing disease1,2
  • Family members may also benefit from knowing whether they are at increased risk of developing ALS1
  • Genetic testing can also help patients discover opportunities to participate in relevant clinical research trials. These trials are further evaluating the role of genetic mutations in ALS1,3

Patients living with ALS—sporadic or familial—may have an associated genetic mutation, which only genetic testing can uncover.1,2

Potential risks

While the physical risks associated with genetic testing may be minimal, there can be emotional, social, or financial consequences of obtaining a genetic test. The possibility of genetic discrimination in employment, as well as for disability or life insurance, can also be a concern for patients.

For these reasons, your patients should speak with a genetic counselor before, during, and after receiving genetic testing results. A genetic counselor can further explain in detail the potential benefits, risks, and limitations of the genetic testing to your patients.

ALS Identified Program features:

ALS panel with more than 20 ALS-associated genes, with an optional add-on for additional, preliminary-evidence genetic mutations.

Saliva, buccal swab, or blood sample collection kits arrive by mail with a prepaid return mailer.

Portal provides easy access to order testing and view results.

Turnaround time is 10 to 21 calendar days (14 days on average).

Results interpretation, background on genes and variants, and relevant literature can be obtained from Invitae.

Sponsored by Biogen and offered through Invitae

Genetic testing today may help provide more information for patients impacted by ALS.1,3

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Third parties and commercial organizations including Biogen may receive de-identified patient data and genetic testing results from ALS Identified, but at no time will they receive identifiable patient information. Third parties and commercial organizations may receive contact information for healthcare professionals who refer patients to ALS Identified for genetic testing.

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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References: 1. Roggenbuck J, Quick A, Kolb SJ. Genetic testing and genetic counseling for amyotrophic lateral sclerosis: an update for clinicians. Genet Med. 2017;19(3):267-274. 2. Prudencio M, Hart PJ, Borchelt DR, Andersen PM. Variation in aggregation propensities among ALS-associated variants of SOD1: correlation to human disease. Hum Mol Genet. 2009;18(17):3217-3226. 3. Benatar M, Stanislaw C, Reyes E, et al. Presymptomatic ALS genetic counseling and testing: experience and recommendations. Neurology. 2016;86(24):2295-2302.

References

1. Roggenbuck J, Quick A, Kolb SJ. Genetic testing and genetic counseling for amyotrophic lateral sclerosis: an update for clinicians. Genet Med. 2017;19(3):267-274. 2. Prudencio M, Hart PJ, Borchelt DR, Andersen PM. Variation in aggregation propensities among ALS-associated variants of SOD1: correlation to human disease. Hum Mol Genet. 2009;18(17):3217-3226. 3. Benatar M, Stanislaw C, Reyes E, et al. Presymptomatic ALS genetic counseling and testing: experience and recommendations. Neurology. 2016;86(24):2295-2302.