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
A living-donor kidney recipient at a second site, from the work-up to a drug-toxicity event. The liver example follows one recipient across the full visit timeline.
Based on the Patient 01 timeline in the WP2 data-model presentation (6 November 2025). The identifiers and centre are the guide's own, and the few values that had to change are listed at the end.
REC-2-0001 is a girl born in February 2015, at the University of Padova (centre 2). End-stage kidney disease from right renal cystic dysplasia was diagnosed at one month old. The transplant on 30 September 2018, at three years old, is the index date.
Study centre and patients
The University of Padova as an Organization, then the recipient REC-2-0001 and the living donor DON-2-0001, aged 29 (the liver recipient's donor was deceased). The DM holds only year and month of birth, so birthDate is the partial date 2015-02.
Catalogue entries
Study-wide definitions: tacrolimus and methylprednisolone as immunosuppressant medications, both shared with the liver example.
Recipient history — primary disease
Renal dysplasia (ICD-10 Q61.4), as a Condition with the kidney in bodySite, onset March 2015. The DM's free text, "end-stage chronic kidney disease secondary to right renal cystic dysplasia", goes in note.
Pre-transplant visit — recipient work-up
VIS-2-0001 runs from the donor work-up in May to the recipient work-up on 4 September 2018. Arterial hypertension, present since January 2017, is a ConcomitantDisease. Anaemia, from June 2017, is not in the DM's concomitant-disease list, so it goes in the free-text other_concomitant note.
The work-up itself: weight 13.1 kg and height 89 cm; BP 99/67, HR 86, SpO₂ 99 %, 37.5 °C; a normal abdominal ultrasound and a normal echocardiogram. Blood group O Rh+ was typed at diagnosis, so its date is March 2015.
Pre-transplant visit — donor work-up
On 25 May 2018, the donor's typing and serology are recorded, all with the Donor as subject:
Blood group O Rh+, identical to the recipient's.
Low-resolution HLA: A24, A30; B7, B14; DR4, DR15.
EBV past infection: VCA IgG and EBNA IgG positive, both IgM negative.
CMV: IgG positive, IgM negative.
The DM's cmv_dna column is blank, so no CMV DNA result is sent: a blank column produces no resource.
Transplant admission
TXP-2-0001 on 30 September 2018. The source has no discharge date, so the admission's period.end is omitted. The transplant details give 42 months from diagnosis to transplant, cold ischemia of 92 minutes and warm ischemia of 6 minutes. The vascular anastomosis was redone because of poor intrarenal vascularisation and graft perfusion, which is recorded as the free-text vascular_anomalies.
1-month follow-up visit
VIS-2-0002 groups what the CRF puts under month 1:
11 October: a brain MRI, abnormal, with bilateral parieto-occipital signal change and subcortical predominance.
5 November: the month-1 blood tests (23 results). The graft is not yet working: creatinine is 2.78 mg/dL and urea 208 mg/dL. There are two eGFRs, each carrying its formula in the LOINC code: Schwartz 13.2 (creatinine) and cystatin C 17. Total bilirubin is sent as < 0.10 with a comparator, not a dataAbsentReason.
Maintenance immunosuppression: tacrolimus 2 mg every 12 hours and methylprednisolone 4 mg daily. The source's start date is "XX/XX/2018", so effective[x] is omitted rather than guessed.
Clinical-event visit — PRES
VIS-2-0003, 10 November 2018. Posterior reversible encephalopathy syndrome is recorded as a typed clinical event (SNOMED 450886002), in a hypertensive child on tacrolimus. This is the drug-toxicity outcome the study tracks, and the MRI a month earlier already showed the pattern. Ambulatory blood pressure monitoring is a ConcomitantProcedure, and its 24-hour means, 99/77, are vital-sign components. The urine protein/creatinine ratio is 0.19 mg/mg. There is no end date, so the event stays active.
What changed from the source
Not carried, because DMv1.2 has no place for it
Native nephrectomy (no) and graft side (left): there are no such transplant columns.
Left ventricular hypertrophy: no; hypertensive retinopathy: no. The concomitant-disease list records diseases that are present; it has no way to say one is absent.
Brain CT at the event: it is not in the instrumental-investigation list. Its finding is kept in the event's note.
MPV, and neutrophils and lymphocytes as percentages: the lab catalogue has only absolute counts for neutrophils and lymphocytes, and no MPV.
Creatinine 2.78 on the event form: the same value as 5 November, so it is not duplicated.
