Table 5.

Recommended Surveillance for Individuals with ALS2-related Disorder

System/ConcernEvaluationFrequency
Neurologic
involvement
Neurologic exam to monitor progression of existing findings & development of new findingsAnnually or as needed
Development /
Educational issues
Monitor developmental progress/educational needs.
Spine and hips Monitor to assure early detection of scoliosis &/or hip dislocation.
Musculoskeletal/
ADL
PT & OT to monitor gross motor & fine motor skills & therapy/equipment needs
Dysarthria Per speech & language therapist
Dysphagia Monitor nutrition, safety of oral feeding in those w/o gastrostomy tube.
Bladder
dysfunction
Per treating urologist
Bowel
dysfunction
Per treating clinician
Family support/
resources
Use of local resources, coordination of care

ADL = activities of daily living; OT = occupational therapy; PT = physical therapy

From: ALS2-Related Disorder

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