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
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
| 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 2026-09-28 | Computable Name: ProtectChildIG | |||
This Implementation Guide expresses the PROTECT-CHILD common data model for children who receive a liver or kidney transplant as standard HL7 FHIR R4 definitions. Four European hospitals can then record clinical, laboratory, immunological, microbiological and genomic information in the same way.
Status: This Implementation Guide is a draft and evolves with ongoing work in PROTECT-CHILD.
PROTECT-CHILD is a Horizon Europe project to improve long-term outcomes in paediatric solid-organ (liver and kidney) transplantation by integrating clinical and genomic data through secure, privacy-preserving technology.
Its architecture aligns with the European Health Data Space (EHDS). It uses interoperable standards (FHIR and OMOP), federated analytics and EHDS "data space capsules", so data stays at each hospital while supporting cross-border research. The pilot covers 200 paediatric transplants. The project is part of the TransplantChild European Reference Network.
| Section | What you'll find |
|---|---|
| Logical Models | The PROTECT-CHILD data model (one logical model per table). |
| Logical Model → FHIR Mapping | How each data-model entity and field maps to FHIR R4 resources. |
| DM → FHIR → OMOP Crosswalk | A single consolidated table joining each data-model variable to its FHIR element and its OMOP CDM concept (table, field, and standardized code). |
| Data Model (ERD) | The entity-relationship diagram of the data model (DMv1.2). |
| Data Dictionary | Every data-model variable, table by table, with type, cardinality and organ scope. |
| Worked Example — Liver | One recipient's record end to end, section by section, showing how the resources link together. |
| Worked Example — Kidney | A living-donor kidney recipient at a second centre, from work-up to PRES on tacrolimus — based on the WP2 Patient 01 timeline. |
| Artifacts | All profiles, extensions, code systems, value sets, and examples. |
Each site stores its data locally in a data space capsule. Federated analytics queries run without moving raw patient data.
| Centre no. | Institution | Country |
|---|---|---|
| 1 | La Paz University Hospital | Spain |
| 2 | University of Padova | Italy |
| 3 | IRCCS ISMETT, Palermo | Italy |
| 4 | University Medical Centre Hamburg-Eppendorf | Germany |
PROTECT-CHILD has received funding from the European Union's Horizon Europe research and innovation programme under grant agreement Nº 101137423, and from the Swiss State Secretariat for Education, Research and Innovation (SERI). IG © 2025 Protect Child.
Package hl7.fhir.uv.extensions.r4#5.2.0 This IG defines the global extensions - the ones defined for everyone. These extensions are always in scope wherever FHIR is being used (built Mon, Feb 10, 2025 21:45+1100+11:00) |
Package hl7.fhir.uv.extensions.r4#5.3.0 This IG defines the global extensions - the ones defined for everyone. These extensions are always in scope wherever FHIR is being used (built Sat, May 16, 2026 18:32+1000+10:00) |
Package hl7.fhir.uv.xver-r5.r4#0.1.0 Extensions for Using Data Elements from FHIR R5 in FHIR R4 (built Fri, Mar 20, 2026 15:40+1100+11:00) |
Package hl7.fhir.eu.extensions.r4#1.3.1 This guide lists the extensions specified for the European REALM. (built Sat, Sep 12, 2026 11:33+0200+02:00) |
Package ihe.pharm.mpd.r4#1.0.0-comment-2 ImplementationGuide for IHE Pharmacy Medication Prescription and Dispense (MPD) profile (built Tue, May 27, 2025 16:32+0200+02:00) |
Package hl7.fhir.eu.base#2.0.1 This guide collects base and core profiles to be used in the European context. It also includes common artifacts, such as the profiles describing the European Health Insurance Card. (built Sun, Sep 13, 2026 09:49+0200+02:00) |
Package hl7.fhir.uv.ipa#1.1.0 This IG describes how an application acting on behalf of a patient can access information about the patient from an clinical records system using a FHIR based API. The clinical records system may be supporting a clinical care provider (e.g. a hospital, or a general practitioner), or a health data exchange, including a national health record system. (built Wed, Mar 19, 2025 14:34+0000+00:00) |
Package hl7.fhir.uv.tools.r4#1.1.2 This IG defines the extensions that the tools use internally. Some of these extensions are content that are being evaluated for elevation into the main spec, and others are tooling concerns (built Tue, Mar 24, 2026 11:13+1100+11:00) |
