hl7-eu-logo
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

Plain Language Summary goes here

Home

Official URL: https://hl7.eu/fhir/ig/hl7.eu.fhir.protect-child/ImplementationGuide/hl7.eu.fhir.protect-child Version: 0.1.0-ci-build
Draft as of 2026-06-05 Computable Name: ProtectChildIG

PROTECT-CHILD Transplant Data Implementation Guide

Status: This Implementation Guide is a draft and may change based on ongoing work in PROTECT-CHILD.

Background

PROTECT-CHILD is a European research project focused on improving long-term outcomes in paediatric solid-organ transplantation (liver and kidney). The project collects longitudinal clinical, immunological, laboratory, microbiological, biospecimen, and omics data from four partner centres:

Centre no. Institution Country
1 La Paz University Hospital Spain
2 University of Padova Italy
3 Son Espases University Hospital, Palma Spain
4 University Medical Centre Hamburg-Eppendorf Germany

Data is stored locally at each site in a data space capsule and federated analytics queries are executed without moving raw patient data.

Scope

This IG defines FHIR R4 profiles, extensions, code systems, and value sets for the PROTECT-CHILD data model version 1.2. It covers:

  • Recipient demographics — age, gender, primary disease diagnosis, PRA, HLA typing, ABO/Rh blood group
  • Donor demographics — age, type (living/deceased), liver graft type, HLA/ABO/Rh
  • Transplant event — transplant type, surgical details, intraoperative findings
  • Follow-up visits — scheduled and clinical-event visits across a 24-month post-transplant timeline
  • Laboratory results — 50+ analytes with LOINC-coded test catalogue
  • Vital signs — blood pressure (including 24-h ABPM), weight, height, BMI, heart rate, SpO2
  • Immunological data — ABO/Rh, HLA allele typing, DSA, Banff category, C4d, ANCA
  • Immunosuppression — induction and maintenance drug regimens with dosing and levels
  • Pre-medication — antihypertensive treatment, rituximab, antiviral prophylaxis
  • Microbiology — EBV, CMV, BKV, Parvovirus B19, HSV, VZV, Adenovirus, and culture results
  • Clinical variables and concomitant diseases — symptoms, comorbidities, and organ dysfunction
  • Clinical events — post-transplant complications, rejection episodes, graft failure, mortality
  • Biospecimens — sample tracking with linked genomic and epigenomic analysis requests

FHIR Version

This IG is based on FHIR R4 (4.0.1).