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Integrating the ALS genetic counseling and testing guidelines: considerations for your practice
Learning Objectives
After watching this activity, participants should be able to:
- Highlight the benefit of genetic counseling for ALS, including in clinical settings where there is no dedicated genetic counselor
- Describe current consensus guidelines for genetic counseling and testing in ALS
- Discuss strategies to facilitate the implementation of ALS genetic counseling and testing guidelines
Overview
The evidence-based consensus guidelines for genetic counseling and testing In amyotrophic lateral sclerosis (ALS) have been published.1 However, there remains a need to improve the implementation of these guidelines, particularly in situations where access to a genetic counselor is limited.2 In this activity, three leading genetic counselors discuss the implementation of the ALS consensus guidelines for genetic counseling and testing using case studies in both the ideal situation of a genetic counselor embedded in a multidisciplinary team and situations where access to a genetic counselor is more limited. They also discuss key challenges in these situations and how they can be overcome.
References
- Roggenbuck J, Eubank BHF, Wright J, et al. Evidence-based consensus guidelines for ALS genetic testing and counseling. Ann Clin Transl Neurol 2023; 10(11): 2074-91.
- Chambers C, Lichten L, Crook A, et al. Incorporating Genetic Testing Into the Care of Patients With Amyotrophic Lateral Sclerosis/Frontotemporal Degeneration Spectrum Disorders. Neurol Clin Pract 2023; 13(5): e200201.
Evidence‐based consensus guidelines for ALS genetic testing and counseling: Roggenbuck J, et al. Ann Clin Transl Neurol. 2023;10:2074-91. doi: 10.1002/acn3.51895
ALS Association:
- Genetic Counseling and Testing Information Sheet
- Genetic Counseling and Testing for ALS
- Benefits and Risks of Genetic Testing for People Living With ALS
- Benefits and Risks of Genetic Testing for Family Members of People Living With ALS
Les Turner ALS Foundation: My ALS Decision ToolTM
National Society of Genetic Counselors (NSGC): “Find a Genetic Counselor” Tool
End the Legacy: Genetic testing information
Your ALS Guide: Genetic counseling and testing for ALS
International Alliance of ALS/MND Associations:
- Fundamental Rights for People Living with SLA/MND
- Fundamental Rights for Caregivers of People with ALS/MND
Federal Code on Presumptive Service Connection for ALS: Presumptive service connection for amyotrophic lateral sclerosis
Veterans Benefits Association Guidelines for Service Connection for Congenital, Developmental, or Hereditary Disorders: M21-1, Part V, Subpart ii, Chapter 2, Section E – Service Connection (SC) for Congenital, Developmental, or Hereditary Disorders (va.gov)
A downloadable pdf version of Support Resources can be found in the Toolkit.
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