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Motor measures

Important note: In addition to the mandatory motor function items in the group “Motor function”, clinician-reported registries must collect a minimum of 1 validated motor measure for each individual.

The list of motor measures included in the item Motor measure below represents all validated motor measures that TREAT-NMD know to be currently in use for SMA. 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. Where there is no pre-existing preference, the following measures are suggested by TREAT-NMD, based on current Standards of Care and prior use in Clinical Trials:

Infantile onset SMA:

  • CHOP-INTEND
  • HFMS
  • HFMS-E

Later onset SMA:

  • HFMS-E
  • RULM

The TREAT-NMD SMA Outcome Measure Library provides registries with guidance if needed on the selection and collection of appropriate outcome measures for each individual/clinic.

Items in this group
Validated motor measure non-evaluation reason CR  longitudinal 

Main reason why a validated motor measure was not taken at the visit on which this registry update is based, if applicable.

In addition to the values listed for this item, registries may add further options in their data collection forms if relevant locally, and/or provide a free text field. However, additional options not specified in this dataset must not be provided in a data submission for a TREAT-NMD enquiry. Future revisions of this dataset may include additional values, and these can be suggested (along with justification) by using the “Report an issue with this item” function.

Item type: single selection
Related items in previous version: 14.01
Value ID Description
Start position

Inability to attain start position or disease progression
Illness

Injury or illness
Comprehension

Inability to follow or understand directions
Behaviour

Refusal, attention or behaviour issue
Fatigue

Fatigue
Pain

Pain or muscle cramp
Technical issue

Equipment or software issue
Record

Motor measure CR    longitudinal     

Related items in previous version: 14.11, 14.13, 14.15, 14.17, 14.19, 14.31, 14.33, 14.35, 14.37, 14.39, 14.41, 14.43, 14.45, 14.47, 14.49, 14.51
Motor measure CR 
Item type: single selection
Usage in other datasets: DMDLGMD
Value ID Description
10MWT

10MWT (10-Metre Walk Test), 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
AIMS

AIMS (Alberta Infant Motor Scale), provide total score between 0 and 58
BBT left hand

BBT (Box and Blocks Test), provide number of blocks for left hand
BBT right hand

BBT (Box and Blocks Test), provide number of blocks for right hand
Brooke

Brooke Scale of Upper Extremity Function, provide grade between 1 and 6
BSID-III composite motor score

BSID-III (Bayley Scales of Infant and Toddler Development), provide composite motor development score between 40 and 160
BSID-III composite motor percentile

BSID-III (Bayley Scales of Infant and Toddler Development), provide composite motor development percentile rank between 1 and 99
CHOP-INTEND

CHOP-INTEND (Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders), provide score between 0 and 64
EK2

EK2 (Egen Klassification 2), provide score between 0 and 51
ES9HPT left hand

ES9HPT (Endurance Shuttle Nine Hole Peg Test), provide time in seconds for left hand
ES9HPT right hand

ES9HPT (Endurance Shuttle Nine Hole Peg Test), provide time in seconds for right hand
ESBBT left hand

ESBBT (Endurance Shuttle Box and Blocks Test), provide number of blocks for left hand
ESBBT right hand

ESBBT (Endurance Shuttle Box and Blocks Test), provide number of blocks for right hand
HFMS

HFMS (Hammersmith Functional Motor Scale), provide total score between 0 and 40
HFMS-E

HFMS-E (Hammersmith Functional Motor Scale Expanded), provide total score between 0 and 66
HINE

HINE Section 2 (Posture) (Hammersmith Infant Neurological Examination), provide score between 0 and 18
MFM-20

MFM-20 total score (Motor Function Measurement), provide total score as percentage between 0 and 100
MFM-20 D1

MFM-20 D1 (Motor Function Measurement), provide domain score as percentage between 0 and 100
MFM-20 D2

MFM-20 D2 (Motor Function Measurement), provide domain score as percentage between 0 and 100
MFM-20 D3

MFM-20 D3 (Motor Function Measurement), provide domain 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
MFM-32 D1

MFM-32 D1 (Motor Function Measurement), provide domain score as percentage between 0 and 100
MFM-32 D2

MFM-32 D2 (Motor Function Measurement), provide domain score as percentage between 0 and 100
MFM-32 D3

MFM-32 D3 (Motor Function Measurement), provide domain score as percentage between 0 and 100
r9HPT left hand

r9HPT (Repeated Nine-Hole Peg Test), provide average time of five rounds in seconds for left hand
r9HPT right hand

r9HPT (Repeated Nine-Hole Peg Test), provide average time of five rounds in seconds for right hand
Revised Brooke left side

Revised Brooke Scale of Upper Extremity Function, provide score between 0 and 6 for left side
Revised Brooke right side

Revised Brooke Scale of Upper Extremity Function, provide score between 0 and 6 for right side
RHS

RHS (Revised Hammersmith Scale), provide total score between 0 and 69
RULM left side

RULM (Revised Upper Limb Module), provide score between 0 and 37 for left side
RULM right side

RULM (Revised Upper Limb Module), provide score between 0 and 37 for right side
TIMPSI

TIMPSI (Test of Infant Motor Performance Screening Items), provide score between 0 and 99
TUG

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

Vignos functional rating scale, provide score between 1 and 10
WHO Motor Milestones

WHO (World Health Organisation) Motor Milestones (observed in clinic), provide score between 0 and 6
Motor measure score CR 

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

Item type: decimal
Related items in previous version: 14.10, 14.12, 14.14, 14.16, 14.18, 14.30, 14.32, 14.34, 14.36, 14.38, 14.40, 14.42, 14.44, 14.46, 14.48, 14.50
Usage in other datasets: DMDLGMD
Dominant hand

The individual's dominant hand. A value must be provided if Motor measure contains a value for a motor measure that is reported separately for each hand. These measures currently include 9HPT (9-Hole Peg Test), BBT (Box and Blocks Test) and their variations.

Item type: single selection
Value ID Description
Left

Left hand
Right

Right hand
Ambidextrous

Ambidextrous
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Example form

Motor measures

Was a validated motor measure taken at this visit?