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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

Clinical Event

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ClinicalEvent profile ClinicalEvent Condition CORE FIELDS Clinical Event ID M Event Type M Visit ID M Event Phase (START) R Event Phase (END) R Event Number R KIDNEY-RELATED Kidney Rejection Spec. O Delayed Graft Function O Previous Urol. Intervention O Vascular Complication O CNI Toxicity (histologic) O LIVER-RELATED AKI Episodes (post-LTX) O Hypoxic-Ischemic Event O DIALYSIS Dialysis Type O Dialysis Start Date O Dialysis End Date O OTHER Cause of Death O Concomitant Medications O Retransplantation O Retransplantation Date O Treatment Adherence O Entry to Transplant List O Prothrombotic Disorders O Kidney Biopsy O

Primary profile: ClinicalEvent (Condition)
Flag observations: ClinicalEventFlagObservation (Observation), one per recorded non-diagnosis flag (concomitant_medications, treatment_adherence), valueBoolean true or false, focus = Reference(ClinicalEvent)

Concept map: ClinicalEventLmToFhir

Cardinality key — M = Mandatory (1..1) · R = Recommended (0..1) · O = Optional (0..1)

Clinical events are post-transplant complications, rejection episodes, graft failure, retransplantation and mortality. ClinicalEventTypeCS / ClinicalEventTypeVS hold the data model's 26 event types plus three diagnosis flags (AKI after liver transplant, histological CNI toxicity, hypoxic-ischemic event); dgf reuses delayed graft function.

One episode is one Condition. The data model's START and END clinical_event rows fold into one Condition:

  • START row → Condition.onsetDateTime, clinicalStatus = #active, encounter = that visit
  • END row → Condition.abatementDateTime, clinicalStatus = #resolved, and the visit in extension[endVisit]
  • both clinical_event_ids are kept in Condition.identifier

Organ scope. DMv1.2 marks every clinical_event column as Both, and this guide follows it. Six columns name one organ: specify_kidney_rejection_episode, previous_urological_intervention, kidney_biopsy and dgf (kidney), episodes_aki_after_ltx and hypoxic_ischemic_event_pltx (liver). We should consider restricting each to that organ's actor.

A visit may carry several events. The data model declares visit → clinical_event as One-to-One.

DM field Card. FHIR path Notes
clinical_event_id M Condition.identifier.value One per DM row folded in: the START row, and the END row when the episode has ended
clinical_event_type_id M Condition.code ClinicalEventTypeVS
visit_id = START M Condition.encounter The visit where the episode started
visit_id = END M Condition.extension[endVisit] The visit where it ended, on the same Condition
event_phase = START R Condition.onsetDateTime Sets clinicalStatus = #active
event_phase = END R Condition.abatementDateTime Sets clinicalStatus = #resolved — on the same Condition
event_number R (calculated; not stored)  
cause_death O Condition.note[cause_death].text  
specify_kidney_rejection_episode O Condition.note[specify_kidney_rejection_episode].text  
previous_urological_intervention O Condition.note[previous_urological_intervention].text  
underlying_prothrombotic_disorders O Condition.note[underlying_prothrombotic_disorders].text  
kidney_biopsy O Condition.note[kidney_biopsy].text  
vascular_complication_type O Condition.evidence.code VascularComplicationTypeVS — coded value on the ClinicalEvent itself
dgf O Condition.code First-class ClinicalEvent; SNOMED 426136000 Delayed renal graft function; false → the same ClinicalEvent with verificationStatus = #refuted (explicitly no)
episodes_aki_after_ltx O Condition.code First-class ClinicalEvent; SNOMED 14669001 Acute kidney injury; false → the same ClinicalEvent with verificationStatus = #refuted (explicitly no)
histologic_evidence_cni_toxicity O Condition.code First-class ClinicalEvent; ClinicalEventTypeCS#histologic-evidence-cni-toxicity (no SNOMED concept); false → the same ClinicalEvent with verificationStatus = #refuted (explicitly no)
hypoxic_ischemic_event_pltx O Condition.code First-class ClinicalEvent; ClinicalEventTypeCS#hypoxic-ischemic-event-pltx (no SNOMED concept); false → the same ClinicalEvent with verificationStatus = #refuted (explicitly no)
concomitant_medications O ClinicalEventFlagObservation.code ClinicalEventEvidenceCS#concomitant-medications; valueBoolean carries the DM value, true or false
treatment_adherence O ClinicalEventFlagObservation.code ClinicalEventEvidenceCS#treatment-adherence; valueBoolean carries the DM value, true or false

Linked Procedures

Sub-events with a coded type and date are ClinicalEventProcedure (Procedure) resources, linked to the parent ClinicalEvent via Procedure.reasonReference.

DM field Card. FHIR path Notes
dialysis_type O Procedure.code SNOMED 302497006 Hemodialysis or 71192002 Peritoneal dialysis
dialysis_start_date O Procedure.performedPeriod.start  
dialysis_end_date O Procedure.performedPeriod.end  
retransplantation O Procedure.code SNOMED 18027006 / 70536003 (the organ transplanted); true → status = #completed, false → status = #not-done with no date
retransplantation_date O Procedure.performedDateTime Date on the retransplantation Procedure
date_entry_transplant_list O Procedure.performedDateTime SNOMED 471300007 On waiting list for organ transplant