NEALS Launches ALS Genetic Access Program
The NEALS ALS Genetic Access Program (ALS GAP) was launched on January 9, 2019 with an informational webinar for NEALS members. NEALS Co-chair Jonathan Glass, and Jennifer Roggenbuck, Genetic Counselor at The Ohio State University Medical Center, introduced the program and provided information on program eligibility and access. If you're a NEALS member and you would like a link to the webinar recording, please email Carly Allen at firstname.lastname@example.org.
ALS GAP 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, 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. Each NEALS site can order a maximum of 5 test kits throughout the pilot program.
- Program participants must have a clinical diagnosis of ALS or ALS/FTD, and a family history of ALS or dementia
- Services must be ordered by a NEALS clinician in the U.S.
Genetic Testing Service
Any NEALS clinician may order genetic testing for persons with ALS or ALS/FTD. All testing will be performed by Prevention Genetics. 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. NEALS clinician is responsible for completing the test requisition form. NEALS clinician will receive the report and is responsible for communicating result to patient and family. Fees for genetic testing will be covered by NEALS.
Ordering Test Kits
- NEALS members can order test kits online from Prevention via custom link (full blood kits, 5 max): https://www.preventiongenetics.com/kits?comm=SP052%20TRF
- 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
- C9orf72 testing only OR
- C9orf72 testing, with reflex to 5 gene panel (only for fALS)
- Specify ALS or ALS/FTD
- Indicate whether family history is positive for dementia and/or ALS, and specific relatives affected
- Results will be reported to ordering clinician
- To facilitate genetic counseling services, also check box to release result to ATGC
Genetic Counseling Service
Any NEALS clinician 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. Genetic counseling is not required in order to order testing, but suggested for:
- Any patient with fALS, irrespective of test status
- Any patient with a positive result
- Any patient with an uncertain result
- Any patient with questions about the psychosocial, legal or other possible implications of testing
Ordering Genetic Counseling
- Patients may schedule their appointments online; should be instructed to select appointment type as “NEALS ALS Genetic Access Program:” https://at-gc.clientsecure.me/client_portal
- Alternatively, a referral form may be faxed to AT-GC
- After genetic counseling, a summary letter will be sent to clinician and patient
- Questions may be sent to email@example.com
NEALS members who have questions about the ALS GAP program can contact Tara Lincoln, NEALS Director of Operations, at firstname.lastname@example.org.