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
Worked Example — Liver
One complete PROTECT-CHILD record, end to end. The Model Maps show each entity alone and the Crosswalk lines up the three representations field by field; this page shows how the resources link together for one patient.
These records are illustrative: they exist to show how the profiles fit together, and are built to exercise the guide rather than to be clinically representative.
REC-1-0001 is Mila, nine years old, at La Paz University Hospital (centre 1), cirrhotic since March 2020. The transplant on 15 August 2023 is the index date every other record is positioned against.
Study centre and patients
La Paz University Hospital as an Organization, then the two people: the recipient REC-1-0001 and the deceased donor DON-1-0001.
Catalogue entries
Study-wide definitions: the two immunosuppressant medications, the two lab tests and the instrumental investigation.
Recipient history — primary disease
The cirrhosis that brings her to transplant, as a Condition with the organ in bodySite. It predates every visit in the record.
The graft episode
TXP-1-0001 — the liver graft, transplanted on 15 August 2023. Its period.start is what makes "before the transplant" a date comparison rather than a label on a visit, and every visit in this journey points at it.
Pre-transplant visit
VIS-1-0001, 25 July to 14 August — ending the day before surgery. Peak PRA is 80%, so rituximab is given while she is waitlisted — not donor-directed, since no organ has been offered — and full HLA typing follows with a negative pre-transplant DSA screen. The donor's own ABO/HLA typing and serology (CMV and EBV IgG positive) are recorded with the donor as subject. The donor type is recorded as Deceased, consistent with the donor's recorded death on 14 August, the day before surgery.
Transplant admission
15 to 28 August, its own inpatient Encounter carrying TXP-1-0001. The transplant, a split graft, is one linked set with its duct-to-duct biliary anastomosis and an intra-operative bleed; induction immunosuppression starts the same day. On day 5 she has acute kidney injury, treated with sixteen days of dialysis and closed at the 1-month visit — one Condition with both dates, not two records. In the data model all of this sat inside the visit typed pre-transplant; here none of it does.
1-month follow-up visit
VIS-1-0002: vitals, three analytes, a biospecimen for genomic analysis, and maintenance tacrolimus with its trough. EBV DNA at 2,450 copies/mL prompts a liver biopsy — EBER-positive nuclei, no bile duct damage or endothelialitis, so EBV hepatitis rather than rejection — and tacrolimus is cut 0.1 → 0.06 mg/kg per dose, twice daily, in response. Hypertension appears here, on tacrolimus and steroids, and amlodipine starts the same day.
Clinical-event visit — acute rejection episode
VIS-1-0003, unscheduled. The rejection episode opens here and is closed at the 6-month visit, again as one Condition. The bloods bring her in: ALT 86 → 210 U/L, bilirubin 3.8 mg/dL, GGT 180. The biopsy grades as RAI 6 of 9 — portal inflammation 3, bile duct damage 2, venous endothelial inflammation 1 — with diffuse C4d (C4d3) in the portal microvasculature and a de novo class I DSA at 8,200 MFI against the donor's mismatched B*08:01. Treatment is methylprednisolone 10 mg/kg once daily for three days, recorded under the rejection-treatment phase and pointing at the episode it treated. The antibody sits under the immunological data report and the biopsy under its own GraftBiopsy, both carrying IMD-1-0002.
6-month follow-up visit
VIS-1-0004: abdominal imaging, and the amlodipine reviewed — still running since September.
12-month follow-up visit
VIS-1-0005: vitals with 24-hour ABPM, and the three analytes repeated — creatinine 1.2 → 0.8 mg/dL, albumin 3.4 → 4.2 g/dL, ALT 86 → 31 U/L. Albumin and ALT track the graft; the creatinine tracks renal recovery from the early injury, and at 0.8 is still flagged high for a nine-year-old.
