Motor measures

Important note: Clinician-reported registries must collect a minimum of one validated motor measure for each individual. The list of motor measures included in the item Motor measure below represents several validated motor measures known to be used for LGMD. Registries are not expected to collect the full list. Selection of appropriate motor measure(s) is at the discretion of the clinician and/or preference of the individual.

Record

Motor measure CR    longitudinal     

Motor measure CR 
Item type: single selection
Usage in other datasets: SMADMD
Value ID Description
10MWT

10MWT (10-Metre Walk Test), provide time in seconds

100MTT

100MTT (100-Meter Timed Test), provide time in seconds

4SC

4SC (4-stair climb), provide time in seconds

6MWT

6MWT (6-Minute Walk Test), provide distance in metres

9HPT left hand

9HPT (9-Hole Peg Test), provide time in seconds for left hand

9HPT right hand

9HPT (9-Hole Peg Test), provide time in seconds for right hand

ACTIVE

ACTIVE (Ability Captured Through Interactive Video Evaluation), provide scaled score

ACTIVE workspace volume

ACTIVE (Ability Captured Through Interactive Video Evaluation), provide workspace volume in cubic metres

Brooke

Brooke Scale of Upper Extremity Function, provide grade between 1 and 6

EK2

EK2 (Egen Klassification 2), provide score between 0 and 51

Grip strength left hand

Grip strength measured using hand dynamometer, provide maximum strength of left hand in newtons

Grip strength right hand

Grip strength measured using hand dynamometer, provide maximum strength of right hand in newtons

MFM-20

MFM-20 total score (Motor Function Measurement), provide total score as percentage between 0 and 100

MFM-32

MFM-32 total score (Motor Function Measurement), provide total score as percentage between 0 and 100

NSAA

NSAA (North Star Ambulatory Assessment), provide score between 0 and 34

NSAD

NSAD (North Star Assessment for Limb Girdle Type Muscular Dystrophies), provide score between 0 and 54

Pincer strength left hand

Pincer strength (fingertip to thumbtip) measured using pinch gauge, provide maximum strength for left hand in newtons

Pincer strength right hand

Pincer strength (fingertip to thumbtip) measured using pinch gauge, provide maximum strength for right hand in newtons

PUL2

PUL2 (Performance of Upper Limb module for DMD 2.0), provide score between 0 and 42

RFF

RFF (Time to rise from the floor), provide time in seconds

TUG

TUG (Timed Up and Go), provide time in seconds

Vignos

Vignos functional rating scale, provide score between 1 and 10

Motor measure score CR 

The Motor measure value description specifies the unit in which the outcome must be provided.

Item type: decimal
Usage in other datasets: SMADMD
Motor measure collection method CR 
Item type: single selection
Value ID Description
Face-to-face

Face-to-face

Live audio

Live audio (e.g. telephone)

Live video

Live video

Video recording

Video recording