Trial News & Events

ALS GAP Update

Update

Due to the success of the ALS GAP pilot program, NEALS has raised additional funds to continue this service. Please request new kits from Prevention Genetics (max of 8 additional kits/site). Also, please remember to offer your patients participation in our ALS Genetics Research study. Patient participation will help us better understand the genetic landscape of ALS in the US, and allow them to choose to be contacted for genetically-based clinical trials. They can self-identify for this study by emailing alsresearch@emory.edu or calling 404 778 3807.

About

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. To learn more about the outcomes of the program, please visit the ALS GAP poster at the Annual NEALS Meeting in October.

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 general@at-gc.com

Questions

NEALS members who have questions about ALS GAP can contact Tara Lincoln, NEALS Director of Operations, at tlincoln@neals.org.