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
A consolidated, searchable reference of every variable in the PROTECT-CHILD data model (v1.2), grouped by entity. For each entity the table lists the data-model field, its label, data type, requiredness, and organ scope; the entity header links to the FHIR profile mapping. For the exact FHIR element each field maps to, follow the map-page link.
Requiredness: M = Mandatory · R = Recommended · O = Optional. Organ: Both / Liver / Kidney.
FHIR mapping: Patient + PatientDemographicsObservation + 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 |
age_years |
Patient age (years) | Integer | R | Both |
age_months |
Patient age (months) | 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 |
FHIR mapping: Patient (Donor profile) — 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 |
FHIR mapping: Encounter — 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 |
FHIR mapping: Procedure + TransplantDetails (Observation panel) — 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 |
FHIR mapping: Observation panel — 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) | Integer | R | Both |
hla_a_2 |
HLA A (Allele 2) | Integer | R | Both |
hla_b_1 |
HLA B (Allele 1) | Integer | R | Both |
hla_b_2 |
HLA B (Allele 2) | Integer | R | Both |
hla_c_1 |
HLA C (Allele 1) | Integer | R | Both |
hla_c_2 |
HLA C (Allele 2) | Integer | R | Both |
hla_drb1_1 |
HLA DRB1 (Allele 1) | Integer | R | Both |
hla_drb1_2 |
HLA DRB1 (Allele 2) | Integer | R | Both |
hla_dp_1 |
HLA DP (Allele 1) | Integer | R | Both |
hla_dp_2 |
HLA DP (Allele 2) | Integer | R | Both |
hla_dqb1_1 |
HLA DQB1 (Allele 1) | Integer | R | Both |
hla_dqb1_2 |
HLA DQB1 (Allele 2) | Integer | R | Both |
post_transplant_ab_anti_hla_dsa_class |
Post-transplant Ab anti-HLA DSA (Class) | Code | R | Both |
pre_trasnplant_anti_hla_dsa |
Pre-transplant 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 |
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 |
FHIR mapping: MedicationStatement (+ child statements) — 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 |
FHIR mapping: Observation panel — 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 |
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 |
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 |
FHIR mapping: Observation panel — 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 |
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 |
FHIR mapping: Medication — see Immunosuppressant map. (DM table: immunosuppressant, 2 fields.)
| Field | Label | Type | Req | Organ |
| — | — | — | — | — |
| imm_id | Immunosuppressant ID | | ID | Both |
| name | Name | Initial immunosuppressive treatment after transplantation (M)
Immunosuppresive treatment
Immunosuppressive drug type | Code | Both |
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 |
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 |
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 |
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 |
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 |