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Table 8 NPC symptoms participants asked to rank in survey

From: Impacts and Burden of Niemann pick Type-C: a patient and caregiver perspective

NPCCSS Domain

Symptom Asked to Rank in Survey

Ambulation

Unsteadiness or clumsiness when walking about from place to place (ataxia)

Fine Motor

Difficulty with coordinating hand movements (dystonia)

Speech

Slurred or irregular speech (dysarthria)

Swallow

Difficulty swallowing (dysphagia)

Eye Movement

Difficulty moving one’s eyes up and down (vertical supranuclear gaze palsy)

Seizures

Seizures

Memory

Memory problems

Hearing

Hearing difficulties

Cognition

Learning difficulties or problems with cognitive abilities like following instructions, making decisions, or focusing attention (cognitive dysfunction or dementia)

Other

Participant could write up to three other symptoms to rank as most important