Epidemiology · Prospective cohortsUpdated October 9, 2026

Cohort study data collection software for baseline, follow-up and retention

A prospective cohort lives or dies on repeat contact: the same people, measured the same way, wave after wave. Capture schedules each wave with a window, sends the questionnaires by link, lets staff enter clinic measures, and records every change.

  • Waves with windows and reminders
  • Exposure, outcome and covariate forms
  • Data dictionary on every export

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

Cohort retention · demo data

Enrolled

412

Wave 2 complete

86%

Overdue

31

Withdrawn

9

Baseline questionnaire412/412
Wave 1 (12 months)371/412

90%

Wave 2 (24 months)238/277

86% of those due

Wave 3 (36 months)41/60

68% of those due

Demo data, not a real study

At a glance

  • A prospective cohort follows people forward in time, so the software must manage repeat waves, exposure and outcome data, and retention, not just a single survey.
  • Capture anchors each wave to enrolment or a recorded date with a window, sends questionnaires by link with reminders, and shows who is overdue.
  • Staff-entered measures (clinic, anthropometry, lab) go on eCRFs with range checks; participant-reported exposures go on phone questionnaires, all in one record.
  • Calculated fields such as BMI and age from date of birth are built in; exposure indices and incidence rates belong in analysis.
  • Exports come with an automatic data dictionary, so the wave structure and codes travel with the dataset.

Windows

on every wave, anchored to enrolment or a recorded date

Email + SMS

reminders with quiet hours in the participant's time zone

Free

sandbox to rehearse the whole cohort, no time limit

EU + US

hosting in Frankfurt or N. Virginia

What cohort studies need

Why a survey tool is not a cohort study tool

In a prospective cohort, participants are enrolled before the outcome happens, exposures are measured at baseline and updated over time, and outcomes are ascertained as they occur. The design is valued because exposure is recorded before the outcome is known. That value is lost when baseline data are unlinked from follow-up, when waves drift out of their intended timing, or when the people who drop out are not recorded as such.

Three requirements follow. First, identity over time: every wave must attach to the same participant record, without a spreadsheet join on name or email. Second, timing: the 12-month wave has to mean roughly 12 months for everyone, so each wave needs an anchor, a window and a visible status. Third, traceable change: when a baseline value is corrected two years later, the old value, the new value and the reason need to be on record, because reviewers and co-investigators will ask.

A general survey tool can do the questionnaire part. The rest, scheduling, site-entered measures, roles and the audit trail, is where a study platform earns its place. If you are comparing tools, REDCap alternatives and EDC for observational studies cover the options at a category level.

Data model

A cohort data model in forms

One participant record, four kinds of form. Demo structure for a hypothetical adult cohort.

Form groupCollectedWho enters itIn Capture
EnrolmentConsent, demographics, eligibilityStaffeCRF plus eConsent
Baseline exposuresDiet, activity, smoking, occupation, medication useParticipantPhone questionnaire by link
Clinic measuresHeight, weight, blood pressure, waist and hip, samplesStaffeCRF with range checks and calculated fields
Follow-up wavesUpdated exposures, new diagnoses, hospital contactsParticipant, then staff verificationRepeating wave schedule with windows
Outcome eventsEvent type, date, source of ascertainmentStaffeCRF with date logic and source field
Contact and statusLast contact, withdrawal, death, lost to follow-upStaffStatus form closing future waves

The ascertainment source for each outcome (self-report, record review, registry linkage) should be a coded field, so sensitivity analyses can split on it.

Waves and timing

Scheduling waves that stay inside their windows

In Capture each visit or wave is anchored to screening, a milestone, an earlier visit, a fixed study day or a date recorded on a form, with a window and an enforcement mode. For a cohort, anchor annual waves to the enrolment date, or to a date recorded at the clinic, and set a window that suits your recruitment plan, for example plus or minus 60 days. The status overview shows every participant against every wave, so overdue contacts are a list, not a rumour.

Questionnaires reach participants on their own phones through a secure link, with no app to install. Reminders go out when a task is due, the next day and before the window closes, and respect quiet hours in the participant's time zone. See the detail in patient diary software, and in ePRO for observational studies for the questionnaire side of non-interventional designs.

Retention is a data problem as much as a field problem. Record contact attempts and the reason for each non-response as coded fields rather than free-text notes, so the analysis can distinguish refusal, death, relocation and unreachable. A withdrawn participant should have a status form that stops further tasks, and the consent they gave should say what happens to data already collected. The observational study consent template and the long-term follow-up consent template are starting points.

Cohort schedule · demo
AssessmentBaselineYr 1Yr 2Yr 3
Consent
Exposure questionnaire
Clinic measures
Blood sample
Event review

x = collected at this wave

Some measures annual, some alternate years

Model your first two waves in the sandbox

Build baseline and a 12-month wave with a window, enrol a test participant, and see the overdue status appear. Free, with every feature.

Set up a cohort free

Data quality

Cleaning at entry and keeping a history

Range checks catch the errors that are cheapest to fix on the day, such as a weight typed in pounds into a kilogram field or a date of birth after the enrolment date. Capture's edit checks raise an auto-query when a site enters a value that breaks a rule, with a configurable priority. Calculated fields show BMI, waist-hip ratio, mean arterial pressure and age from date of birth read-only during entry. See edit checks software.

Corrections matter more in a cohort than in a short trial, because a baseline record may be revised years later when a new analysis question is asked. Every change is stored at field level with user, time, old value, new value and reason, and the audit trail cannot be edited from the interface. For an epidemiology team that expects a dataset to be re-used, the history is part of the dataset's provenance.

Identity and access follow roles. Site coordinators see participant names at their own site, while researchers and analysts work with coded IDs, which suits cohorts where analysts should never see who participants are. Clinical data are soft-deleted only. For an overview of controls, see research data capture for academic studies.

Analysis

From the cohort to the analysis dataset

Exports are CSV or Excel in wide format, one row per submission, with raw and decoded files and an automatic data dictionary or codebook. Filters cover date ranges and sites. Statisticians can pull the dataset at any wave without a data-management request, and the dictionary documents each variable. SAS transport files and Define-XML are available for teams that work in that format.

Derived variables that depend on analysis choices, for example cumulative exposure, person-time at risk or incidence rates, are best computed in the analysis programme from the recorded dates, where the code can be shared and reviewed. If you plan to publish, the STROBE reporting guideline for observational studies asks you to describe participants at each stage, including those lost to follow-up, and the status and wave data above make those flow counts straightforward to produce.

Setup checklist

Before you enrol the first participant

Wave anchors and windows defined

Enrolment date or recorded date, with window width and enforcement mode.

One participant ID across waves

Site-level numbering such as 001-0042, never name-based keys.

Exposure variables coded

Single and multiple choice, numeric and date types, not free text.

Outcome ascertainment recorded

Event type, date and source as coded fields.

Status and withdrawal form

Closes future tasks and records the reason.

Consent covers re-contact and storage

Observational, biobank or long-term follow-up wording as relevant.

Dictionary reviewed

Export test data and read the codebook as the statistician would.

FAQ

Questions teams ask before they switch

Something not covered here? Ask us directly.

What software is used for cohort study data collection?

Teams use research data capture systems that handle repeat waves, participant records, staff-entered measures and questionnaires. Capture provides these with visit windows, reminders, edit checks and a field-level audit trail.

How does Capture handle follow-up waves?

Each wave is a visit anchored to enrolment, a milestone, an earlier visit, a fixed day or a recorded date, with a window and an enforcement mode. A status overview shows each participant against each wave.

Can participants complete questionnaires on their own phones?

Yes. They open a secure link in the browser with no app to install, and reminders go out when a task is due, the next day and before the window closes.

Does Capture compute incidence rates or person-time?

No. Those depend on analysis choices and are best calculated in your analysis programme from the recorded dates. Capture does calculate BMI, waist-hip ratio, MAP and age from date of birth on forms.

How do we record loss to follow-up?

Use a status form with coded reasons such as withdrawn, deceased, moved or unreachable, so future tasks stop and flow counts can be produced for reporting.

What do the exports look like?

CSV or Excel in wide format, one row per submission, with raw and decoded files and an automatic data dictionary. SAS transport files and Define-XML are available.

Is it suitable for a grant-funded academic cohort?

Capture is designed for academic teams as well as sponsors. The sandbox is free with every feature and you pay only when you go live; see the academia page for details.

Keep the cohort intact from baseline to the last wave

Build waves, windows and reminders in the free sandbox. No credit card; pay only when you go live.

Set up a cohort free