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
Primary profile: ClinicalEvent (Condition)
Flag observations: ClinicalEventFlagObservation (Observation) — one per true boolean flag; focus = Reference(ClinicalEvent)
Cardinality key — M = Mandatory (1..1) · R = Recommended (0..1) · O = Optional (0..1)
Clinical events represent post-transplant complications, rejection episodes, graft failure, re-transplantation, and mortality. The 26-value event type vocabulary is defined in ClinicalEventTypeCS / ClinicalEventTypeVS.
Event lifecycle (start vs. end) is captured via native Condition status and onset/abatement:
Condition.onsetDateTime + Condition.clinicalStatus = #activeCondition.abatementDateTime + Condition.clinicalStatus = #resolved| DM field | Card. | FHIR path | Notes |
|---|---|---|---|
| clinical_event_id | M | Condition.identifier.value |
|
| clinical_event_type_id | M | Condition.code |
ClinicalEventTypeVS |
| visit_id | M | Condition.encounter |
|
| event_phase = START | R | Condition.onsetDateTime |
Sets clinicalStatus = #active |
| event_phase = END | R | Condition.abatementDateTime |
Sets clinicalStatus = #resolved |
| event_number | R | (calculated; not stored) | Auto-incremental per patient — not persisted in FHIR |
| cause_death | O | Condition.note[cause_death].text |
authorString = "cause_death" |
| specify_kidney_rejection_episode | O | Condition.note[specify_kidney_rejection_episode].text |
authorString = "specify_kidney_rejection_episode"; Kidney only |
| previous_urological_intervention | O | Condition.note[previous_urological_intervention].text |
authorString = "previous_urological_intervention"; Kidney only |
| underlying_prothrombotic_disorders | O | Condition.note[underlying_prothrombotic_disorders].text |
authorString = "underlying_prothrombotic_disorders" |
| kidney_biopsy | O | Condition.note[kidney_biopsy].text |
authorString = "kidney_biopsy"; Kidney only |
| vascular_complication_type | O | Condition.evidence.code |
VascularComplicationTypeVS — coded value on the ClinicalEvent itself |
| dgf | O | ClinicalEventFlagObservation.code |
ClinicalEventEvidenceCS#dgf; presence = true, absence = false; Kidney only |
| episodes_aki_after_ltx | O | ClinicalEventFlagObservation.code |
ClinicalEventEvidenceCS#episodes-aki-after-ltx; Liver only |
| histologic_evidence_cni_toxicity | O | ClinicalEventFlagObservation.code |
ClinicalEventEvidenceCS#histologic-evidence-cni-tox |
| hypoxic_ischemic_event_pltx | O | ClinicalEventFlagObservation.code |
ClinicalEventEvidenceCS#hypoxic-ischemic-pltx; Liver only |
| concomitant_medications | O | ClinicalEventFlagObservation.code |
ClinicalEventEvidenceCS#concomitant-medications |
| treatment_adherence | O | ClinicalEventFlagObservation.code |
ClinicalEventEvidenceCS#treatment-adherence |
Sub-events that carry a coded type and a date are represented as ClinicalEventProcedure (Procedure) resources linked to the parent ClinicalEvent via Procedure.reasonReference. Query: Procedure?reason-reference={clinical-event-id}&code={type}.
| DM field | Card. | FHIR path | Notes |
|---|---|---|---|
| dialysis_type | O | Procedure.code |
ClinicalEventProcedureTypeCS#hemodialysis or #peritoneal-dialysis |
| dialysis_start_date | O | Procedure.performedPeriod.start |
|
| dialysis_end_date | O | Procedure.performedPeriod.end |
|
| retransplantation | O | Procedure.code |
ClinicalEventProcedureTypeCS#retransplantation — presence means true, absence means false |
| retransplantation_date | O | Procedure.performedDateTime |
Date on the retransplantation Procedure |
| date_entry_transplant_list | O | Procedure.performedDateTime |
ClinicalEventProcedureTypeCS#transplant-listing |