Table 5.

Recommended Surveillance for Individuals with TARDBP-Related Amyotrophic Lateral Sclerosis-Frontotemporal Dementia

System/ConcernEvaluationFrequency
ALSFTD
Neurologic Neurologic exam for new manifestations &/or response to medicationsEvery 2-3 mosUndefined; depends on disease progression & presenting manifestations
Mobility/ADL Physical medicine & rehab / PT & OT
Cognitive function Rapid screening tools, incl tests of verbal fluency
Psychiatric/behavioral manifestations Medical history, neurologic exam
Pseudobulbar affect Medical historyNA
Dysarthria Eval by speech-language therapistEvery 3-6 mosUndefined; depends on disease progression & presenting manifestations
Dysphagia Medical historyEvery 2-3 mosNA
Sialorrhea
Respiratory function Medical history, clinical exam, additional testing (e.g., forced vital capacity, vital capacity)
Bladder function Medical history
Family/caregiver support & resources Medical history; assess need for additional support.Undefined; depends on disease progression & presenting manifestations

ADL = activities of daily living; NA = not applicable; OT = occupational therapy; PT = physical therapy

From: TARDBP-Related Amyotrophic Lateral Sclerosis-Frontotemporal Dementia

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