Instrument template · Multiple sclerosisUpdated September 28, 2026

EDSS eCRF template for multiple sclerosis trials

The Expanded Disability Status Scale runs from 0 to 10 in half steps, built from eight functional system scores and walking ability. Record each functional system and the ambulation findings, not only the final step, so the score can be reviewed.

  • 8 functional systems
  • 0 to 10 in 0.5 steps
  • Ambulation recorded

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EDSS · Month 24
Subject 006-0015 · Examining neurologistSubmitted

Functional systems

Pyramidal

FSPYR
2

Cerebellar

FSCER
1

Sensory

FSSEN
2

Ambulation

Maximum walking distance without aid

AMBDIST
450m

EDSS step

EDSS
3.5
Functional systems and ambulation kept with the step

At a glance

  • Developed by John Kurtzke, the EDSS is the most widely used disability measure in multiple sclerosis trials.
  • It runs from 0 (normal examination) to 10 (death due to MS) in 0.5 steps from 1.0 upwards.
  • Lower steps are driven by eight functional systems: pyramidal, cerebellar, brainstem, sensory, bowel and bladder, visual, cerebral, and other.
  • From about 4.0 upwards, steps depend mainly on walking ability: for example, 6.0 means needing a walking aid on one side to walk about 100 metres.
  • Many trials use standardised scoring definitions and certified raters to reduce variability.

In trials

Confirmed disability progression

MS trials rarely analyse EDSS as a simple average. The key endpoint is time to confirmed disability progression: an increase that is sustained at a later visit, typically confirmed after 12 or 24 weeks. A common definition is an increase of at least 1.0 point from a baseline of 5.5 or less (1.5 points from a baseline of 0), or 0.5 points from a baseline above 5.5. Confirmation visits must not be affected by a relapse.

That definition has data consequences. Every EDSS needs a date, and the system needs to know whether the participant was in relapse, so relapses must be recorded on their own form with onset dates. Unscheduled visits for confirmation should use the same form as scheduled ones.

Composite endpoints

Progressive MS trials often combine EDSS with the timed 25-foot walk and the nine-hole peg test, counting progression on any of them. Record those tests as timed fields with units and trial numbers on the same visit.

EDSS and relapse assessments · RMS trial
AssessmentScrBLM3M6M9M12Unsch
EDSS with functional systems
Timed 25-foot walk
Relapse assessment
MRI

Unscheduled visits for relapse or confirmation use the same forms

Structure

EDSS functional systems and ambulation steps

ComponentRangeWhat it covers
Pyramidal0 to 6Weakness and limb function
Cerebellar0 to 5Coordination and tremor
Brainstem0 to 5Eye movements, speech, swallowing
Sensory0 to 6Touch, pain and vibration sense
Bowel and bladder0 to 6Continence and urgency
Visual0 to 6Acuity and field
Cerebral0 to 5Mood and cognition
AmbulationDistance and aidDrives steps from about 4.0 to 7.5

Ranges shown follow the commonly used Kurtzke definitions. Use the scoring conventions and rater training specified by your protocol.

In Capture

Every component on one form, with relapse context

The EDSS form holds each functional system score, walking distance and aid use, and the step itself, all as coded fields. A separate relapse form records onset and resolution, and the field-level audit trail shows who changed any score and why.

  • Permitted values only for each component.
  • Relapse form with onset dates.
  • Unscheduled visits use the same forms.
EDC for multiple sclerosis trials
Edit visit · Week 4

Anchor

Milestone (e.g. Randomization)
  • Screening date
  • Milestone (e.g. Randomization)
  • An earlier visit's date
  • Fixed study day
  • A form field date

Offset

4Weeks

Window

-3 d/+3 d

Epoch

Treatment

Visit location

On-siteRemoteHomeHybrid

Build an EDSS form and relapse form

Copy the template and add unscheduled visits in the free sandbox.

Use the EDSS template free

Rater quality

Separating the examining and treating neurologists

Many MS drugs have visible side effects or require monitoring that can reveal the treatment. To protect the EDSS from that bias, trials commonly use an examining neurologist who only performs the EDSS and does not see adverse event data, and a treating neurologist who manages the participant. In practice, that means planning each rater's access so safety and dosing data stay with the treating team.

Standardised scoring, such as the Neurostatus definitions widely used in trials, with rater certification, reduces the variability that makes small EDSS changes hard to interpret. Record the rater for each assessment so consistency can be checked.

Before go-live

EDSS setup checklist

Scoring convention

Standardised definitions and certified raters.

Examining rater separated

No access to adverse events or dosing.

Components recorded

Functional systems, ambulation distance and aid.

Relapse form

Onset and resolution dates for confirmation rules.

Progression definition

Thresholds and confirmation interval in the analysis plan.

Unscheduled visits

Same forms for confirmation and relapse visits.

FAQ

Questions about this template

Something not covered here? Ask us directly.

What is the EDSS?

The Expanded Disability Status Scale, a 0 to 10 scale of disability in multiple sclerosis based on a neurological examination and walking ability.

How is confirmed disability progression defined?

Commonly as an increase of 1.0 point from a baseline of 5.5 or less (1.5 from 0), or 0.5 from a baseline above 5.5, sustained at a confirmation visit 12 or 24 weeks later.

What does EDSS 6.0 mean?

Needing intermittent or constant assistance on one side, such as a cane, to walk about 100 metres.

Why record functional system scores?

They determine the lower steps of the scale, and reviewers need them to check the step assigned.

Should the EDSS rater see adverse events?

Many trials use an examining rater who does not see safety or dosing data, to protect against unblinding.

Does Capture calculate the EDSS step?

The rater records the step with its components. Progression is derived from the recorded values in analysis.

EDSS data reviewers can check

Functional systems, ambulation and relapses together. Free sandbox.

Use the EDSS template free