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 — Kidney
Worked Example — Kidney
A leaner record at a second site, carrying what a liver record cannot. The liver example follows one recipient across the full visit timeline.
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-2-0001 is Luca, twelve years old, at the University of Padova (centre 2), in CKD stage 5 since November 2021. The transplant on 12 March 2024 is the index date. The centre number inside the identifier is what keeps him distinct from REC-1-0001 at La Paz.
Study centre and patients
The University of Padova as an Organization, then the recipient REC-2-0001 and the living related donor DON-2-0001 — where the liver recipient's donor was deceased.
Catalogue entries
Study-wide definitions: basiliximab and tacrolimus as immunosuppressant medications, plus the methylprednisolone entry shared with the liver example.
Recipient history — primary disease
Chronic kidney disease stage 5, as a Condition with the kidney in bodySite. It predates every visit in the record.
Pre-transplant episode and transplant admission
One inpatient episode, VIS-2-0001, from 1 to 25 March 2024. The graft is implanted on 12 March with a standard ureteroneocystostomy, and an intra-operative ischaemic episode is recorded against the same procedure. Delayed graft function follows on day 3, treated with nine days of haemodialysis — the event a liver recipient cannot carry. Basiliximab induction is given on the day of transplant and day 4.
1-month follow-up visit
VIS-2-0002: blood pressure 124/78 at the 95th centile, creatinine still high at 1.6 mg/dL, a normal graft Doppler ultrasound, and maintenance tacrolimus with a trough of 6.2 ng/mL.
Clinical-event visit — rejection with BK-virus nephropathy
VIS-2-0003, unscheduled. Creatinine 2.4 mg/dL brings him back. BK-virus surveillance across blood, urine and graft biopsy — 42,000 copies/mL in blood, positive on both biopsy assays — shows BK-virus nephropathy. There is no antiviral: the only treatment is to reduce immunosuppression, so tacrolimus is halved to 0.05 mg/kg.
Clinical-event visit — acute rejection after the reduction
VIS-2-0004. Creatinine 3.1 mg/dL and a repeat biopsy showing acute rejection, Banff 4, C4d negative, with a class II donor-specific antibody at moderate MFI. Treatment is a three-day methylprednisolone pulse at 10 mg/kg/day.
Termination visit — graft failure
VIS-2-0005, January 2025. Creatinine 5.2 mg/dL and graft failure recorded as a typed clinical event; haemodialysis restarts with no end date, and he is relisted in February.
