Instrument template · Oncology safetyUpdated September 28, 2026

PRO-CTCAE on participant phones, weekly, without an app

PRO-CTCAE lets patients report the symptomatic side effects clinicians grade with CTCAE. Pick the items your treatment needs, schedule them weekly and let participants answer from their own phone.

  • Select only the items you need
  • 7-day recall, weekly schedule
  • Sits beside clinician CTCAE grading

Free sandbox · No credit card · 21 CFR Part 11 aligned

Symptom check · Week 3

In the last 7 days:

How OFTEN did you have NAUSEA?

NeverRarelyOccasionallyFrequentlyAlmost constantly

What was the SEVERITY of your NAUSEA at its WORST?

NoneMildModerateSevereVery severe
Answered from the participant's own phone

PRO-CTCAE at a glance

  • PRO-CTCAE is the patient-reported outcome version of the Common Terminology Criteria for Adverse Events, developed by the US National Cancer Institute.
  • It is an item library, not a fixed questionnaire: 124 items covering 78 symptomatic adverse events. Each trial selects the items relevant to its treatment.
  • Each symptom is rated on up to three attributes: frequency, severity and interference with usual activities, plus presence/absence or amount for some symptoms, on 5-point scales.
  • The standard recall period is the past 7 days, which fits a weekly schedule.
  • A published composite grading algorithm combines attributes into a single grade per symptom. PRO-CTCAE complements clinician CTCAE grading; it does not replace it.

Why it exists

Clinicians under-report symptoms. PRO-CTCAE fills the gap.

Research comparing clinician-graded adverse events with patient reports has consistently found that clinicians miss or under-grade many symptomatic toxicities: fatigue, nausea, neuropathy, pain and others that patients feel between visits. NCI developed PRO-CTCAE so those symptoms could be reported directly by the people experiencing them, using terms aligned with CTCAE so the two sources can be compared.

Regulators have increasingly encouraged patient-reported tolerability data in cancer trials, and PRO-CTCAE is the most widely used tool for it. It sits alongside the clinician-graded adverse event form, not in place of it: the investigator still grades and reports AEs with CTCAE, while PRO-CTCAE gives the patient's side of the same story.

Choosing items

Select items from the expected toxicity profile of your treatment (for example nausea, vomiting, diarrhoea, mouth sores and fatigue for many chemotherapies, or rash and itching for some targeted therapies), plus a few for symptoms you want to rule out. Keep the list short enough to complete in a few minutes every week; long weekly questionnaires are the fastest way to lose compliance.

Composite grading

A published algorithm combines a symptom's frequency, severity and interference answers into a composite grade from 0 to 3. Apply it in analysis from the exported coded answers; keep the raw attribute responses as the source.

PRO-CTCAE · Cohort symptom summary, Week 3

Completed

41 / 44

Severe or worse

6

Overdue

3

Fatigue: moderate or worse19/41
Nausea: moderate or worse11/41
Diarrhoea: frequently or more6/41
Weekly symptom picture, not just at visits

Response scales

PRO-CTCAE attributes and their 5-point scales

AttributeQuestion patternResponse options
FrequencyHow OFTEN did you have [symptom]?Never, Rarely, Occasionally, Frequently, Almost constantly
SeverityWhat was the SEVERITY of your [symptom] at its WORST?None, Mild, Moderate, Severe, Very severe
InterferenceHow much did [symptom] INTERFERE with your usual or daily activities?Not at all, A little bit, Somewhat, Quite a bit, Very much
Presence / absenceDid you have any [symptom]?Yes, No
AmountUsed for a few symptoms such as hair lossItem-specific

PRO-CTCAE is maintained by the US National Cancer Institute and available from NCI under its terms of use, with official translations. Use the published wording.

Weekly schedule

A recurring questionnaire that runs between visits

PRO-CTCAE earns its value between clinic visits, when symptoms happen. In Capture it runs as a recurring questionnaire every seven days, with a completion window and a reminder ladder so participants answer on time without anyone phoning them.

  • Recurring schedule: weekly, or every few days during intensive cycles.
  • Reminders when due, the next day and before the window closes, respecting quiet hours.
  • Completion and at-risk participants shown on the dashboard.
Patient symptom tracking for clinical trials
Daily evening diary · Visit 1 to Visit 15
Recurring diaryDaily18:00 to 24:00Hard window
D1✓
D2✓
D3✓
D4✓
D5✓
D6Missed
D7✓
D8✓
D9✓
D10✓
D11✓
D12✓
D13Open
D14
Compliance, last 14 days92%

Clinical follow-up

Flag the answers someone should look at

A participant reporting "very severe" diarrhoea on a Tuesday should not wait for the next cycle. Custom-value edit checks on the severity items raise an auto-query for the site, which can then contact the participant and, where the investigator judges it an adverse event, record it on the AE form.

  • Custom-value edit checks on the highest response levels.
  • Queries with priority in the site action list.
  • Your protocol defines who reviews and how quickly.
Vital signs · Systolic blood pressure

Edit checks / auto-queries

2
Auto-query

Type

Range High

Operator

Greater than

Value

180

Priority: High

Auto-query

Type

Range Low

Operator

Less than

Value

80

Priority: Normal

Query raised automatically

Value 192 violates limit (180). Please verify.

Build a five-item PRO-CTCAE form in minutes

Pick your symptoms, schedule weekly and preview on your phone in the free sandbox.

Build your PRO-CTCAE form free

Practical setup

Setting up PRO-CTCAE for a specific regimen

Because PRO-CTCAE is a library, the build starts with a decision rather than a template: which symptoms, which attributes, how often. Getting that decision right keeps the questionnaire short enough to complete weekly for months, which is the whole point of collecting it.

Build one form per regimen

Studies with several arms or treatment phases may need different item sets. Build a form per item set and place each on the schedule for the arms or epochs where it applies, rather than one long form with everything in it. Every item keeps the attributes NCI defines for it; do not add attributes the library does not include.

Other symptoms

Participants may experience symptoms not on your list. A free-text question asking about any other symptoms, followed by a severity rating, catches them without adding dozens of items. Site staff review these entries and decide whether they represent adverse events.

Children and translations

A paediatric version (Ped-PRO-CTCAE) exists for children and adolescents, with caregiver-report options. Use only NCI's official translations for non-English speaking participants; each language has been linguistically validated.

Before go-live

PRO-CTCAE setup checklist

Items selected with the clinical team

Based on the expected toxicity profile, plus a few to rule out.

Attributes as published

Each item keeps exactly the attributes NCI defines.

Weekly schedule and window

Recurring every 7 days with reminders and a completion window.

Escalation rule agreed

Which answers raise a query, and who reviews them how quickly.

Composite grading planned

Algorithm and missing-data handling in the analysis plan.

Official translations

NCI-provided languages only.

FAQ

Questions about this template

Something not covered here? Ask us directly.

What is PRO-CTCAE?

The patient-reported outcome version of the Common Terminology Criteria for Adverse Events: an NCI item library that lets patients report symptomatic side effects of cancer treatment.

How many PRO-CTCAE items are there?

The library contains 124 items representing 78 symptomatic adverse events. Trials select only the items relevant to their treatment.

What recall period does PRO-CTCAE use?

The past 7 days, which suits a weekly schedule.

Does PRO-CTCAE replace clinician CTCAE grading?

No. It complements it. Investigators still grade and report adverse events with CTCAE.

Is PRO-CTCAE free?

It is available from the National Cancer Institute under its terms of use, with official translations.

How are composite grades calculated?

A published algorithm combines frequency, severity and interference answers into a composite grade per symptom. Apply it in analysis from the exported coded responses.

Can participants answer at home?

Yes. The questionnaire opens in the phone browser from a secure link, with no app to install.

Hear about symptoms when they happen

Weekly PRO-CTCAE on participant phones. Free sandbox, no credit card.

Build your PRO-CTCAE form free