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

Data Dictionary

Every variable in the PROTECT-CHILD data model (DMv1.2), grouped by entity, with its label, data type, requiredness and organ scope. Each entity header links to its map page, which gives the exact FHIR element per field.

Requiredness: M = Mandatory · R = Recommended · O = Optional. Organ: Both / Liver / Kidney.

Patient

FHIR mapping: Patient (EU base; birth year and month in birthDate) + PatientImmunologyObservation + Condition (diagnosis) — see Patient map. (DM table: patient, 10 fields.)

Field	Label	Type	Req	Organ
patient_id	patient_id	ID	M	Both
gender	Gender	Code	M	Both
birth_year	Year of birth	Integer	R	Both
birth_month	Month of birth	Integer	R	Both
max_pra	Pre-transplant PRA max	Integer	R	Both
last_pra	Pre-transplant PRA last	Integer	R	Both
date_histological_diag	Date of histological diagnosis	Date	M	Both
date_diag_primary_disease	Date of diagnosis of primary liver disease	Date	M	Both
diag_primary_disease	Diagnosis of primary liver disease	String	M	Both
center_no	Center number	CustomCode	M	Both

Donor

FHIR mapping: Patient (EU base; Donor profile) + DonorTypeObservation + DonorLiverTypeObservation + PatientDemographicsObservation — see Donor map. (DM table: donor, 5 fields.)

Field	Label	Type	Req	Organ
donor_id	id	ID	M	Both
age_years	Donor age (years)	Integer	M	Both
age_months	Donor age (months)	Integer	M	Both
type	Donor type	Code	M	Both
liver_type	Liver type	Code	R	Liver

Visit

FHIR mapping: Encounter (Visit) + GraftEpisode (EpisodeOfCare) + TransplantAdmission (Encounter), the last two derived from the transplant row — see Visit map. (DM table: visit, 4 fields.)

Field	Label	Type	Req	Organ
visit_id	Visit ID	ID	M	Both
patient_id	Patient ID relationship	ElementReference	M	Both
date	Date	Date	M	Both
visit_type	Visit type	CustomCode	M	Both

Transplant

FHIR mapping: Procedure + TransplantDetails (Observation panel) + TransplantAnastomosis (Procedure) + IntraoperativeComplication (Condition) — see Transplant map. (DM table: transplant, 16 fields.)

Field	Label	Type	Req	Organ
transplant_id	transplant_id	ID	M	Both
donor_id	Donor ID	ElementReference	M	Both
visit_id	Visit ID	ElementReference	M	Both
d_r_weight_ratio	Weight D/R ratio	Float	R	Both
vessel_mismatch_d_r	Vessel mismatch donor/recipient	Boolean	R	Both
cold_ischemia_time	Cold ischemia time	Integer	R	Both
warm_ischemia_time	Warm ischemia time	Integer	R	Both
tx_type	Type of transplant (liver, kidney, combined)	Code	M	Both
date_tx	Date of transplant	Date	M	Both
time_diag_to_tx	Time from diagnosis to transplant	Calculated	M	Both
vascular_anomalies	Vascular anomalies	String	R	Both
type_surgical_biliary_anastomosis	Type of surgical biliary anastomosis	Code	R	Liver
intraoperative_complications	Intraoperative complications	Code	R	Both
intraoperative_complications_other	Intraoperative complications (specify)	String	R	Liver
type_ureteral_graft_anastomosis	Type of ureteral graft anastomosis	Code	O	Both
other_type_ureteral_graft_anastomosis	Other type of ureteral graft anastomosis	String	O	Both

Immunological Data

FHIR mapping: ImmunologicalDataReport (DiagnosticReport, EU core) + one Observation per result; the biopsy columns become GraftBiopsy (DiagnosticReport, EU core) — see Immunological Data map. (DM table: immunological_data, 27 fields.)

Field	Label	Type	Req	Organ
immunological_data_id	immunological_data_id	ID	M	Both
donor_id	donor_id	ElementReference	O	Both
visit_id	Visit ID	ElementReference	M	Both
blood_group	Blood group	Code	R	Both
rh_factor	Rh Factor	Code	R	Both
hla_a_1	HLA A (Allele 1)	String	R	Both
hla_a_2	HLA A (Allele 2)	String	R	Both
hla_b_1	HLA B (Allele 1)	String	R	Both
hla_b_2	HLA B (Allele 2)	String	R	Both
hla_c_1	HLA C (Allele 1)	String	R	Both
hla_c_2	HLA C (Allele 2)	String	R	Both
hla_drb1_1	HLA DRB1 (Allele 1)	String	R	Both
hla_drb1_2	HLA DRB1 (Allele 2)	String	R	Both
hla_dp_1	HLA DP (Allele 1)	String	R	Both
hla_dp_2	HLA DP (Allele 2)	String	R	Both
hla_dqb1_1	HLA DQB1 (Allele 1)	String	R	Both
hla_dqb1_2	HLA DQB1 (Allele 2)	String	R	Both
post_transplant_ab_anti_hla_dsa_class	Post-transplant Ab anti-HLA DSA (Class)	Code	R	Both
pre_transplant_anti_hla_dsa	Pre-transplant anti-HLA DSA (DMv1.2 sheet: pre_trasnplant_anti_hla_dsa)	String	R	Both
mfi	MFI Category	Code	R	Both
banff_category	Banff category (Done?)	Code	R	Both
ihc_if_c4d	IHC/IF C4d (Result)	Boolean	R	Both
if	IF	String	R	Both
c4d	C4d	String	R	Both
anca	ANCA	Boolean	R	Both
antibody_type	Antibody Type (Specification)	String	R	Both
anti_hla_antibodies	Presence of anti-HLA antibodies	Boolean	O	Both

BioSample

FHIR mapping: Specimen + ServiceRequest (analysis request) — see BioSample map. (DM table: bio_sample, 6 fields.)

Field	Label	Type	Req	Organ
bio_sample_id	Biological Sample ID	ID	M	Both
visit_id	Visit ID	ElementReference	M	Both
collection_date	Sample collection date	Date	R	Both
send_ingemm_date	Sample send to INGEMM date	Date	R	Both
genomic_sample	Genomic sample	Boolean	R	Both
epigenomic_sample	Epigenomic Sample	Boolean	R	Both

Pre-Medication

FHIR mapping: MedicationStatement, one per drug (antihypertensive, rituximab, antiviral prophylaxis) — see Pre-Medication map. (DM table: pre_medication, 7 fields.)

Field	Label	Type	Req	Organ
pre_medication_id	pre_med_id	ID	M	Both
visit_id	Visit ID	ElementReference	M	Both
antihypertensive_treatment	Antihypertensive treatment (describe)	Code	R	Both
rituximab	Rituximab	Boolean	R	Both
date_last_rituximab	Date of last Rituximab dose	Date	R	Both
other_medications	Other medications	String	R	Both
antiviral_prophylaxis	Antiviral prophylaxis	Boolean	R	Both

Clinical Variable

FHIR mapping: Observation panel + ConcomitantDisease (Condition) + ConcomitantProcedure (Procedure) — see Clinical Variable map. (DM table: clinical_variable, 10 fields.)

Field	Label	Type	Req	Organ
clinical_variable_id	clinical_variable_id	ID	M	Both
visit_id	Visit ID	ElementReference	M	Both
weight	Weight	Float	R	Both
height	Height	Float	R	Both
concomitant_disease	concomitant_disease_id	Code	M	Both
description	Description	String	R	Both
diuresis_value	Diuresis value (ml/day)	Float	R	Both
other_symptoms	Other Symptoms	String	R	Both
other_concomitant	Other concomitant diseases	String	R	Both
organ_dysfunction	Specify organ dysfunction	String	R	Both

Vital Sign

FHIR mapping: Observation panel — see Vital Sign map. (DM table: vital_sign, 21 fields.)

Field	Label	Type	Req	Organ
vital_sign_id	vital_sign_id	ID	M	Both
visit_id	Visit ID	ElementReference	M	Both
date	Date	Date	M	Both
systolic_blood_pressure	Systolic blood pressure	Integer	R	Both
diastolic_blood_pressure	Diastolic blood pressure	Integer	R	Both
heart_rate	Heart rate	Integer	R	Both
oxygen_saturation	Oxygen saturation	Integer	R	Both
temperature	Temperature	Float	R	Both
bmi	BMI	Float	R	Both
sbp_percentile	Systolic BP (mmHg)	Integer	R	Both
dbp_percentile	Diastolic BP (mmHg)	Integer	R	Both
mean_sbp_24	Mean SBP – 24h (mmHg)	Integer	R	Both
mean_dbp_24	Mean DBP – 24h (mmHg)	Integer	R	Both
mean_sbp_day	Mean SBP – Daytime (mmHg)	Integer	R	Both
mean_dbp_day	Mean DBP – Daytime (mmHg)	Integer	R	Both
mean_sbp_night	Mean SBP – Night time (mmHg)	Integer	R	Both
mean_dbp_night	Mean DBP – Night time (mmHg)	Integer	R	Both
sbp_load	SBP Load (%)	Integer	R	Both
dbp_load	DBP Load (%)	Integer	R	Both
sbp_dip	SBP Dip (%)	Integer	R	Both
dbp_dip	DBP Dip (%)	Integer	R	Both

Concomitant Medication

FHIR mapping: MedicationStatement — see Concomitant Medication map. (DM table: concomitant_medication, 7 fields.)

Field	Label	Type	Req	Organ
concomitant_medication_id	concomitant_medication_id	ID	M	Both
visit_id	Visit ID	ElementReference	M	Both
medication_name	Medication	String	R	Both
dose		Float	R	Both
start_date		Date	R	Both
status		Code	R	Both
end_date		Date	R	Both

Microbiology

FHIR mapping: DiagnosticReport (EU core) + one Observation per test + MicrobiologyDiagnosis (Condition) — see Microbiology map. (DM table: microbiology, 35 fields.)

Field	Label	Type	Req	Organ
microbiology_id	microbiology_id	ID	M	Both
donor_id	donor_id	ElementReference	O	Both
visit_id	Visit ID	ElementReference	M	Both
ebv_dna	Blood EBV-DNA	Boolean	R	Both
ebv_dna_copies	EBV-DNA (copies/ml)	Float	R	Both
ebv_igm_anti_ea	EBV serology IgM anti-EA	Boolean	R	Both
ebv_igm_anti_vca	EBV serology IgM anti-VCA	Boolean	R	Both
ebv_igg_anti_vca	EBV serology IgG anti-VCA	Boolean	R	Both
ebv_igg_ebna	EBV serology IgG EBNA	Boolean	R	Both
cmv_dna	Blood CMV-DNA	Boolean	R	Both
cmv_dna_copies	CMV-DNA (copies/ml)	Float	R	Both
cmv_igm	CMV serology IgM	Boolean	R	Both
cmv_igg	CMV serology IgG	Boolean	R	Both
parvovirus_b19_dna	Blood Parvovirus B19-DNA	Boolean	R	Both
parvovirus_b19_dna_copies	Blood Parvovirus B19 DNA (copies/ml)	Float	R	Both
parvovirus_b19_igg	Parvovirus B19 serology IgG	Boolean	R	Both
parvovirus_b19_igm	Parvovirus B19 serology IgM	Boolean	R	Both
hsv_igg	HSV serology IgG	Boolean	R	Both
hsv_igm	HSV serology IgM	Boolean	R	Both
adenovirus_igg	Adenovirus serology IgG	Boolean	R	Both
adenovirus_igm	Adenovirus serology IgM	Boolean	R	Both
blood_adenovirus_dna	Blood Adenovirus DNA Result	Boolean	R	Both
blood_adenovirus_dna_copies	Blood Adenovirus DNA (copies/ml)	Float	R	Both
vzv_igg	VZV serology IgG	Boolean	R	Both
vzv_igm	VZV serology IgM	Boolean	R	Both
blood_bkv_dna	Blood BKV-DNA	Boolean	R	Both
blood_bkv_dna_copies	Blood BKV-DNA (copies/ml)	Float	R	Both
urine_bkv_dna	Urine BKV-DNA	Boolean	R	Both
bkv_dna_kidney_biopsy	BKV-DNA on kidney biopsy	Boolean	R	Kidney
bkv_fish_kidney_biopsy	BKV FISH on kidney biopsy	Boolean	R	Kidney
blood_colture	Blood colture	Boolean	R	Kidney
urine_colture	Urine colture	Boolean	R	Kidney
other_positivity	Other positivity	String	R	Kidney
ebv_hepatitis_liver	EBV-Hepatitis on liver	Boolean	R	Liver
evidence_bkvan	Histological evidence of BKVAN	Code	R	Both

Instrumental Investigation

FHIR mapping: Observation — see Instrumental Investigation map. (DM table: instrumental_investigation, 7 fields.)

Field	Label	Type	Req	Organ
inst_inv_id	Patient Instrumental Investigation ID	ID	M	Both
visit_id	Visit ID	ElementReference	M	Both
instrumental_investigation	Instrumental investigation	Code	M	Both
date	Date	Date	R	Both
result	Result	Code	R	Both
abnormality	Abnormality	String	R	Both
other_investigation	Other Investigation	String	R	Both

Immunosuppressant

FHIR mapping: Medication (EU core) — see Immunosuppressant map. (DM table: immunosuppressant, 2 fields.)

Field	Label	Type	Req	Organ
imm_id	Immunosuppressant ID	ID	M	Both
name	Name (DMv1.2 CRF variable: "Initial immunosuppressive treatment after transplantation")	Code	M	Both

Immunosuppressant to Patient (ImmPat)

FHIR mapping: MedicationStatement + ImmPatPKObservation (Observation) — see Immunosuppressant to Patient (ImmPat) map. (DM table: imm_pat, 11 fields.)

Field	Label	Type	Req	Organ
imm_pat_id	Immunosuppressant to patient ID	ID	M	Both
imm_id	Immunosuppressant ID relationship	ElementReference	M	Both
visit_id	Visit ID	ElementReference	M	Both
phase	Phase	CustomCode	M	Both
dose	dose	Float	R	Both
pre_dose_level	pre-dose level	Float	R	Both
csa_2h_post_dose_level	CsA 2h post-dose level	String	R	Both
auc	AUC	Float	R	Both
start_date	start_date	Date	R	Both
end_date	end_date	Date	R	Both
unit	Unit	Code	R	Both

Lab Test

FHIR mapping: ObservationDefinition — see Lab Test map. (DM table: lab_test, 2 fields.)

Field	Label	Type	Req	Organ
lab_test_id	lab_test_id	ID	M	Both
name	Name	Code	M	Both

Lab Result

FHIR mapping: Observation — see Lab Result map. (DM table: lab_result, 8 fields.)

Field	Label	Type	Req	Organ
lab_result_id	lab_result_id	ID	M	Both
lab_test_id	lab_test_id	ElementReference	M	Both
visit_id	Visit ID	ElementReference	M	Both
date	Date	Date	M	Both
unit	unit	Code	M	Both
value	Value	Float	R	Both
gfr_formula	Formula used GFR	String	R	Both
gfr_cyst_formula	Formula used (GFR Cyst)	String	R	Both

Clinical Event Type

FHIR mapping: CodeSystem / ValueSet — see Clinical Event Type map. (DM table: clinical_event_type, 2 fields.)

Field	Label	Type	Req	Organ
clinical_event_type_id	patient_id	ID	M	Both
name	Name	Code	M	Both

Clinical Event

FHIR mapping: Condition + ClinicalEventFlagObservation + ClinicalEventProcedure — see Clinical Event map. (DM table: clinical_event, 23 fields.)

Field	Label	Type	Req	Organ
clinical_event_id	Clinical Event ID	ID	M	Both
clinical_event_type_id	Clinical Event Type ID	ElementReference	M	Both
visit_id	Visit ID	ElementReference	M	Both
event_phase	Event Phase	CustomCode	R	Both
event_number	Event Number	Calculated	R	Both
specify_kidney_rejection_episode	Specify Kidney Rejection Episode	String	O	Both
dgf	Delayed Graft Function	Boolean	O	Both
previous_urological_intervention	Previous urological intervention	String	O	Both
vascular_complication_type	Vascular Complication Type	Code	O	Both
episodes_aki_after_ltx	Episodes of AKI after LTx	Boolean	O	Both
histologic_evidence_cni_toxicity	Histologic evidence of CNI toxicity	Boolean	O	Both
hypoxic_ischemic_event_pltx	Hypoxic ischemic events after pLTx	Boolean	O	Both
dialysis_type	Type (Dialysis)	Code	O	Both
dialysis_start_date	Start date (Dialysis)	Date	O	Both
dialysis_end_date	End date (Dialysis)	Date	O	Both
cause_death	Cause of Death	String	O	Both
concomitant_medications	Concomitant medications	Boolean	O	Both
retransplantation	Retransplantation (Status)	Boolean	O	Both
retransplantation_date	Retransplantation (Start date)	Date	O	Both
treatment_adherence	Treatment adherence (Status)	Boolean	O	Both
date_entry_transplant_list	Date of entry in transplant list	Date	O	Both
underlying_prothrombotic_disorders	Underlying prothrombotic disorders	String	O	Both
kidney_biopsy	Kidney Biopsy	String	O	Both