TREAT-NMD Core Datasets

Patient-reported outcome measures

Record

This record is longitudinal: For each record instance, a datestamp with month and year must be captured. See the introduction for more information.

Item type:	single selection
Related items in previous version:	18.02, 18.06
Usage in other datasets:	SMA LGMD

Value ID	Description
DISABKIDS	DISABKIDS (Measurement of Quality of Life and Level of Distress)
INQoL	INQoL (Individualised Neuromuscular Quality of Life Questionnaires) 2.0, provide score between 0 and 274
KIDSCREEN-52	KIDSCREEN-52
PedsQL 4.0 Generic Core Scales	PedsQL 4.0 Generic Core Scales
PedsQL 3.0 Neurosmuscular Module	PedsQL 3.0 Neurosmuscular Module, provide score between 0 and 100
PedsQL Multidimensional Fatigue Scale	PedsQL Multidimensional Fatigue Scale, provide score between 0 and 72
PedsQL 3.0 Duchenne Muscular Dystrophy Module	PedsQL 3.0 Duchenne Muscular Dystrophy Module
PODCI	PODCI (Pediatric Outcomes Data Collection Instrument), provide score between 0 and 100

The Patient-reported outcome measure value description specifies which type of score must be provided.

Item type:	decimal
Related items in previous version:	18.04, 18.07
Usage in other datasets:	SMA LGMD