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PROTECT-CHILD Pediatric Transplant Data Implementation Guide
0.1.0-ci-build -

PROTECT-CHILD Pediatric Transplant Data Implementation Guide
0.1.0-ci-build - ci-build

PROTECT-CHILD Pediatric Transplant Data Implementation Guide, published by Protect Child. This guide is not an authorized publication; it is the continuous build for version 0.1.0-ci-build built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/hl7-eu/protect-child/ and changes regularly. See the Directory of published versions

Patient Timeline

Patient Timeline

The PROTECT-CHILD follow-up schedule spans 24 months after transplant. This page shows the visit schedule and which data is captured at each stage. Every follow-up record links to its Visit, and each Visit links to the Patient — so the timeline is the backbone that ties the whole data model together.

PROTECT-CHILD patient timeline

Visit schedule

  • Pre-transplant (baseline) — recipient demographics, gender, age, primary disease diagnosis and date, PRA (max/last), HLA typing, ABO/Rh, and pre-medication (antihypertensive treatment, rituximab, antiviral prophylaxis, desensitisation).
  • Transplant (day 0) — donor information (type, age, graft, HLA/ABO/Rh), the transplant procedure and type, intraoperative details (ischaemia times, anastomoses, complications), and induction immunosuppression.
  • Scheduled follow-up — 1, 3, 6, 12 and 24 months — vital signs (including 24-hour ABPM), clinical variables, laboratory results, immunological data, microbiology, instrumental investigations, maintenance immunosuppression with pharmacokinetic levels, concomitant medications, and biosamples.
  • Clinical-event visit — an unscheduled visit recorded whenever a clinical event occurs (rejection, infection, graft failure, and so on), at any point on the timeline.
  • Termination visit — the study end / end-of-follow-up visit.

Data domains across the timeline

Vital signs / ABPM · laboratory · immunological data · microbiology · immunosuppression + PK · instrumental investigations · concomitant medication · clinical events · biosamples (→ genomic / epigenomic analysis).

For the full field list see the Data Dictionary; for how each field maps to FHIR see the Mapping pages.