ALSP Aware

A genetic counseling and testing program for Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP)

InformedDNA®, with support from Vigil Neuroscience, Inc., is providing no-cost genetic counseling and testing to individuals with a family history of Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP). ALSPAware is also available to participating physicians to test individuals who are suspected of having ALSP.

Use our convenient online registration and scheduling tool Or, call: 888-418-9309

ALSP is a hereditary (i.e., runs in families) neurologic condition caused by a change (also called a mutation or variant) in the CSF1R gene. The symptoms of ALSP can be very similar to many other psychiatric and neurologic conditions such as Alzheimer’s disease or multiple sclerosis. Because of this, it can be difficult to make an accurate diagnosis based on clinical symptoms alone. The ALSPAware program provides genetic counseling and genetic testing at no cost to eligible participants in a single gene test or, for certain individuals, a panel test may be offered. Single gene test (CSF1R): Available to individuals with a family history of ALSP. Check out our easy-to-understand patient brochure. Panel gene testing: Available to ALSPAware participating physicians to test individuals who are suspected of having ALSP. This option includes a 24 gene test panel (including CSF1R). If you are a healthcare provider interested in learning more about ALSPAware, please contact patients@vigilneuro.com or see this brochure.

Who is eligible for this program?

Adults (18 years or older), AND
Living in the United States, AND
Have a family history of ALSP, OR
Are referred by an ALSPAware participating physician

What to expect in a genetic counseling appointment with InformedDNA

The genetic counselors at InformedDNA working on this program are highly trained in hereditary neurological conditions. As part of this program individuals will receive initial and post-test genetic counseling over the phone.

At the initial appointment, the genetic counselor will:

Collect medical history and a 3-4 generation family history where available;
Discuss the genetics of ALSP;
Review the benefits and limitations of genetic testing;

If you decide to proceed with genetic testing, then the genetic counselor will coordinate the test order and sample collection kit to be sent to you (cheek swab)

Results will be available in approximately three weeks from when the lab receives the sample back from you

At the post-test appointment, the genetic counselor will:

Review the genetic test result and implications for personal health and risks to family members; and
Provide a written summary of the discussion and a copy of the genetic test result to the individual

Schedule an Appointment

Use our convenient online registration and scheduling tool Or, call: 888-418-9309

A genetic counseling and testing program for Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP)

Who is eligible for this program?

What to expect in a genetic counseling appointment with InformedDNA

Schedule an Appointment

Contact us

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