Therapeutic area · Cell and gene therapyUpdated September 28, 2026

EDC for cell and gene therapy trials, from apheresis to year 15

Cell and gene therapy studies run on a different clock: collection, manufacturing, conditioning, a single infusion day, intensive early safety monitoring and years of follow-up. Capture structures each phase so the data holds together over the whole timeline.

  • Schedule anchored to infusion day
  • CRS and ICANS on the AE log
  • Long-term follow-up with ePRO

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Autologous CAR-T study timeline
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Weeks from enrolment

Screening and apheresis
Manufacturing

Chain of identity recorded

Lymphodepletion
Day 0 infusion and acute monitoring

CRS and ICANS assessments

Response and follow-up
Then long-term follow-up for years

What matters in cell and gene therapy trials

  • Schedules are anchored to infusion day (day 0), with pre-infusion steps (collection, manufacturing, conditioning) whose timing varies per participant.
  • Early safety focuses on cytokine release syndrome (CRS) and neurotoxicity (ICANS), commonly graded with consensus criteria, alongside cytopenias and infections.
  • Autologous products need chain of identity: the product infused must be traceable to the participant it was made from.
  • FDA recommends long-term follow-up, for example up to 15 years for some integrating vectors and genome editing products and around 5 years for others, depending on the product's risk.
  • Patient numbers are often small, so every data point matters and data quality problems cannot be averaged away.

The timeline

Anchor everything to day 0

In a conventional trial, visits follow enrolment or randomisation. In a cell therapy trial, the time from enrolment to infusion depends on manufacturing and on the participant's condition, and everything that matters for safety and efficacy is measured relative to the infusion. The study schedule has to reflect that: pre-infusion visits relative to enrolment, and post-infusion visits (day 1, 7, 14, 28 and so on) relative to the infusion date.

In Capture each visit is anchored to a date: screening, a milestone, an earlier visit, a fixed study day or a date recorded on a form. Post-infusion visits can therefore be anchored to the infusion date recorded on the infusion form, with their own windows, while pre-infusion visits follow enrolment. Epochs separate the phases, and the status overview shows every participant against every visit, whatever their individual timeline.

Chain of identity

Manufacturing and logistics systems hold the chain of identity and custody for autologous products. The eCRF should record the identifiers needed to link the clinical record to the product (for example batch or lot numbers and collection and infusion dates) so the link can be verified during monitoring. The manufacturing system remains the source for chain of custody.

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

Early safety

CRS and neurotoxicity on the AE log

Record CRS and ICANS as adverse events with their grade, onset, maximum grade and management, using the grading system specified in the protocol. Serious events raise routed safety alerts, the SAE timeline tracks each event to sign-off, and adverse events of special interest get their own form linked to the SAE.

  • AE minimum dataset enforced on submission.
  • AESI categories with a dedicated form.
  • Routed safety alerts with acknowledgement.
  • Lab alerts for cytopenias routed to the medical monitor.
Adverse event reporting software
Adverse event · 01-004
AE term *Headache
Onset date *UNK-JUN-2026
Serious? *Yes
Severity / CTCAE grade *Grade 2
Causality to IMP *Required when serious
Save draftSubmit

Cannot submit yet

Causality is required because the event is serious.

Long-term follow-up

Keeping participants for 5 to 15 years

Long-term follow-up studies ask participants to report new malignancies, neurological or autoimmune conditions and other delayed events for many years. Annual questionnaires completed at home, with reminders, reduce clinic burden and keep participants in contact, while site visits capture examinations and labs when needed.

  • Recurring annual questionnaires on participants' phones.
  • Reminders and windows for infrequent visits.
  • One audit trail across the whole follow-up.
Long-term follow-up consent
1

When due

18:00

Your evening diary is open

2

Next day

18:00

Reminder: your diary is still open

3

Final notice

21:30

Last chance before the window closes

Quiet hours

22:00 to 08:00 in the participant's time zone

Stops

As soon as the task is completed

Model a day-0 anchored schedule

Build pre- and post-infusion epochs with visit windows in the free sandbox.

Build your CGT study free

Study build

Cell and gene therapy build checklist

Epochs defined

Pre-infusion relative to enrolment; post-infusion relative to day 0.

Product identifiers

Batch or lot, collection and infusion dates recorded for chain-of-identity verification.

CRS and ICANS grading

Grading system named in the protocol and help text.

AESIs listed

Secondary malignancy, prolonged cytopenia and others as defined.

Long-term follow-up plan

Duration by product type and remote options.

Consent for LTFU

Participants understand the follow-up commitment.

FAQ

Questions teams ask before they switch

Something not covered here? Ask us directly.

Why are cell therapy schedules anchored to infusion day?

Because time from enrolment to infusion varies with manufacturing and patient condition, while safety and efficacy are measured relative to the infusion.

How long is long-term follow-up for gene therapy?

FDA recommends up to 15 years for some products, such as integrating vectors and genome editing, and around 5 years for others, depending on risk.

How are CRS and ICANS recorded?

As adverse events with grade, onset, maximum grade and management, using the grading system in the protocol.

Does the EDC manage chain of identity?

The manufacturing system holds chain of custody. The eCRF records the identifiers needed to link the clinical record to the product.

Can I try it free?

Yes, in the free sandbox with every feature.

Data that holds together from apheresis to year 15

Free sandbox with every feature.

Build your CGT study free