Outcome Measure Library (SMA) feedback

Please complete this feedback form to provide feedback on the Outcome Measure Library

Section 1: Your information

Please provide your information in case we need to contact you about your feedback.
Name * First Last
Email address, if we need further information *
Please indicate the type of feedback you wish to provide and complete the relevant section(s) below: *
Provide missing information, or correct wrong information (go to section 2) Suggest and outcome measure for inclusion (go to section 3) General feedback on the Outcome Measure Library (go to section 4)
Section 2: Provide missing information, or correct wrong information.

You can add three suggestions here. If you are providing more than three suggestions, please continue on a new form.
Suggestion 1: Outcome Measure
Column Heading:
Feedback:
Suggestion 2: Outcome Measure
Column Heading:
Feedback:
Suggestion 3: Outcome Measure
Column Heading:
Feedback:
Section 3: Suggest an outcome measure for inclusion

Please complete as much information as possible. If you wish to suggest more than one outcome measure, please complete a form for each one.
Full name of outcome measure
Website or other main source of information about the measure:
Motor Measure or patient reported (PROM)?

Motor Measure or patient reported (PROM)? Motor measure PROM
Is this outcome measure SMA specific?

Is this outcome measure SMA specific? Yes No Not sure
Suitable age ranges
≤2 yrs 3-5 yrs 6-17 yrs ≥ 18 yrs other age range other age range
Suitable function levels
Non-Sitter Sitter Walker
If you know, please tell us which languages the measure is available in
Terms of Use

Terms of Use Free and openly available Free but must register Purchase Required Other Other
Is the a scale available online?

Is the a scale available online? No unknown Yes, please provide link to online resource
Is the manual available online?

Is the manual available online? No unknown Yes, please provide link to online resource
Is training required to perform the outcome measure

Is training required to perform the outcome measure Training required Training preferable Qualified professional only No Training needed N/A (Patient/Parent reported) Other Other
Average time taken to complete this outcome measure
Equipment needed to complete this outcome measure (type 'None@ if no equipment needed):
Link to key publication 1
Link to key publication 2
Any additional notes that should be included
Section 4: General feedback on the Outcome Measure Library
Please provide any general feedback here, such as usefulness, layout, functionality etc.
Data Protection Statement

Information collected through this form will be used to make sure the contact information we currently hold is still up to date and to help us manage our communications with the registries involved in the project. Contact information will be held on Newcastle Universities Servers for the duration of the project and for a period of up to 5 years after its end. The TREAT-NMD Secretariat will have access to contact information.

Outcome Measure Library (SMA) feedback

Outcome Measure Library (SMA) feedback

Section 1: Your information

Section 2: Provide missing information, or correct wrong information.

Section 3: Suggest an outcome measure for inclusion

Section 4: General feedback on the Outcome Measure Library

Data Protection Statement