NEALS ALS GAP Update
Please note that we have limited funds for this program, and that we will need to discontinue ALS-GAP if funds run out. Please use ALS-GAP only for patients who do not have resources to pay for genetic testing (i.e. insurance or personal funds). We are looking to raise money to continue the program, and hope to keep this going for the long term.
Please also note that, going forward, Prevention Genetics will require that all clinical information on the Test Requisition Form be complete before they will run a test. This information is necessary to track program metrics and ensure the ongoing success and availability of the program.
The NEALS ALS GAP (ALS Genetic Access Program) provides clinical genetics services to pALS who are under the care of a registered NEALS clinician. Funded by the Muscular Dystrophy Association, The ALS Association, Avexis, and Biogen, and administered by NEALS, this program includes clinical genetic testing and genetic counseling via telemedicine. There is no cost to the patient or clinic.
Ordering Genetic Testing
Services must be ordered by a NEALS clinician in the U.S. All pALS with a family history of ALS (fALS) or dementia (dALS) are eligible to have C9orf72 repeat expansion testing. fALS patients who test negative for C9orf72 are eligible for a targeted multigene panel: SOD1, FUS, TARDP, TBK1, VCP. The NEALS clinician will receive the report and is responsible for communicating results of testing to the patient and family. Fees for genetic testing will be covered by NEALS.
- NEALS members can order test kits online from Prevention via custom link: https://www.preventiongenetics.com/GAPALS
- Complete custom test requisition form which will be enclosed in the kit
- Send completed TRF and blood specimen to Prevention Genetics in postage-paid mailer
Ordering Genetic Counseling
NEALS clinicians may order genetic counseling for any person with ALS who has a family history of ALS or dementia, before or after testing. Counseling is provided by Advanced Tele-Genetic Counseling (AT-GC), a telemedicine service staffed by board-certified genetic counselors licensed in multiple states.
- For pre-test genetic counseling, a referral form may be faxed to AT-GC
- For post-test genetic counseling, check the referral box on the updated Test Request Form
- Patients may schedule their appointments online at neals.at-gc.com (patients should indicate whether they are requesting a pre-test or post-test appointment in the notes section of the online scheduler)
- After genetic counseling, a summary letter will be sent to clinician and patient
- The cost of counseling is covered by the NEALS GAP program
- Questions may be sent to email@example.com
ALS Genetics Research Study
The Emory ALS Center is inviting those who have undergone genetic testing to participate in a research study. Patient participation will help scientists better understand the genetic landscape of ALS in the US, and allow participants to choose to be contacted for genetically-based clinical trials. Patients can self-identify for this study by emailing firstname.lastname@example.org or calling 404-778-3807.
NEALS members who have questions about ALS GAP can contact Tara Lincoln, NEALS Director of Operations, at email@example.com.