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Table 13 PRO reporting timescales

From: A feasibility study of mHealth and wearable technology in late onset GM2 gangliosidosis (Tay-Sachs and Sandhoff Disease)

Patient Reported Outcomes and Quality of Life Scales

Timing Schedule (Days)

Tremor Impact Scale

8

Impact of Disease Scale

28

Impact on the family Scale

28

Wider impact Scale

28

Perceived Stress

60

Global Self Worth

60

Rosenberg Self Esteem

60

CHU9D

60

General Fatigue

31

Sleep/Rest Fatigue

31

Cognitive Fatigue

31