History of being a tissue or organ recipient


Parameter Case Report Form and Response Options

Does the patient have a history of being an organ transplant recipient? Which transplantation was performed? Yes No Unknown
Heart
Lung
Liver
Kidneys
Intestine
Skin
Cornea
Ossicle
Heartvalve
Blood vessel
Cerebral meninges
Bone tissue
Cartilage tissue
Tendon

This is an example of how the case report form could look like when such a data collection tool is used.


To integrate data from clinical care and research such as clinical trials, the guide relies on FHIR resources for data-exchange from the clinical and diagnostic healthcare process rather than constructing a plain questionnaire.

This profile of a FHIR Condition is derived from the Diagnosis-profile of the Medical Informatics Initiative (MII). The valueset bindings on the Condition.code element have been constrained to solely feature the response options for this particular parameter of the case report form. For the explicitly listed diseases in the case report form, the SNOMED and ICD codes are also explicitly specified in the ValueSets below. Note that for the 'Other' option the ValueSets contain filters that allow a number of other codes for this category that are included in the expansion.

A separate instance of a Condition resource is created for each of the requested diseases.

To represent the presence, absence or uncertainty of findings, use Condition.verificationStatus or uncertaintyOfPresence on Condition.modifierExtension. This is used to map the Yes/No/Unknown scheme from case report forms to the Condition resource. Note the additional constraint on Condition that checks if either verificationStatus or the extension is present:

keyseverityhumanexpression
unk-1errorIf verificationStatus is present, uncertaintyOfPresence-Extension SHALL NOT be present.verificationStatus.exists() != Condition.modifierExtension.where(url = 'https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/uncertainty-of-presence').exists()

Profile - History of being a Tissue or Organ Recipient

Canonical: https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/organ-recipient

Snapshot

ReferenzPrimaerdiagnoseS I0..1Extension(Reference(Condition))
uncertaintyOfPresenceS ?! I0..1Extension(CodeableConcept)
identifierΣ0..*Identifier
clinicalStatusS Σ ?! I0..1CodeableConceptBinding
systemΣ1..1uri
versionΣ0..1string
codeΣ1..1code
displayΣ0..1string
userSelectedΣ0..1boolean
systemΣ1..1uri
versionΣ0..1string
codeΣ1..1code
displayΣ0..1string
userSelectedΣ0..1boolean
textΣ0..1string
systemS Σ1..1uri
versionΣ0..1string
codeS Σ1..1code
displayΣ0..1string
userSelectedΣ0..1boolean
textΣ0..1string
severity0..1CodeableConceptBinding
Mehrfachcodierungs-KennzeichenS I0..1Extension(Coding)
SeitenlokalisationS I0..1Extension(Coding)
DiagnosesicherheitS I0..1Extension(Coding)
systemS Σ1..1uriFixed Value
versionS Σ1..1string
codeS Σ I1..1code
displayΣ0..1string
userSelectedΣ0..1boolean
systemS Σ1..1uriFixed Value
versionΣ1..1string
codeS Σ1..1code
displayΣ0..1string
userSelectedΣ0..1boolean
systemS Σ1..1uri
versionΣ0..1string
codeS Σ1..1code
displayΣ0..1string
userSelectedΣ0..1boolean
textΣ0..1string
systemS Σ1..1uri
versionΣ0..1string
codeΣ1..1code
displayΣ0..1string
userSelectedΣ0..1boolean
textΣ0..1string
subjectS Σ I1..1MII-Reference(Patient | Group)
encounterS Σ I0..1MII-Reference(Encounter)
lebensphase-vonS I0..1Extension(CodeableConcept)
lebensphase-bisS I0..1Extension(CodeableConcept)
onsetDateTimeS Σ0..1dateTime
abatementDateTimedateTime
abatementAgeAge
abatementPeriodPeriod
abatementRangeRange
abatementStringstring
recordedDateS Σ1..1dateTime
recorderΣ I0..1Reference(Practitioner | PractitionerRole | Patient | RelatedPerson)
asserterΣ I0..1Reference(Practitioner | PractitionerRole | Patient | RelatedPerson)
summaryI0..1CodeableConcept
assessmentI0..*Reference(ClinicalImpression | DiagnosticReport | Observation)
type0..1CodeableConcept
codeΣ I0..*CodeableConcept
detailΣ I0..*Reference(Resource)
noteS0..*Annotation


Extension - Uncertainty of Presence

Canonical: https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/uncertainty-of-presence

Snapshot

extensionI0..0Extension
url1..1System.StringFixed Value
systemΣ1..1uriFixed Value
versionΣ0..1string
codeΣ1..1codeFixed Value
displayΣ0..1string
userSelectedΣ0..1boolean
textΣ0..1string


ValueSets

Use the SNOMED-CT code 161663000 |History of being a tissue or organ recipient (situation)| on the Condition.code element.

If a history of being a tissue or organ recipient is present, the SNOMED-CT valueset shall be used on the Condition.bodySite element to encode the organ that was transplanted.

Note that the codes from the ICD value set are used for Condition.code and contain the information about the transplanted organ. In that case, Condition.bodySite must match the ICD code or may not be used because of redundancy.


Canonical: https://www.netzwerk-universitaetsmedizin.de/fhir/ValueSet/organs-for-transplant

ValueSet 'OrgansForTransplant'

Version1.0.6
Published byBerlin Institute of Health at Charité (BIH)
StatusActive
ExperimentalFalse

Organs in the context of transplantation

Contact Information

Website: https://www.bihealth.org/en/re...

This value set includes codes from the following code systems:


Canonical: https://www.netzwerk-universitaetsmedizin.de/fhir/ValueSet/history-of-organ-transplantation-icd

ValueSet 'HistoryOfTransplantationICD'

Version1.0.6
Published byBerlin Institute of Health at Charité (BIH)
StatusActive
ExperimentalFalse

History of organ transplantation ICD-10-GM codes

Contact Information

Website: https://www.bihealth.org/en/re...

This value set includes codes from the following code systems:

  • Include codes from ICD10GM where concept IsA Z94
  • The following codes from system: ICD10GM

    CodeDisplay
    Z94.1Zustand nach Herztransplantation
    Z94.2Zustand nach Lungentransplantation
    Z94.4Zustand nach Lebertransplantation
    Z94.0Zustand nach Nierentransplantation
    Z94.88Zustand nach sonstiger Organ- oder Gewebetransplantation Inkl.: Darm Pankreas
    Z94.5Zustand nach Hauttransplantation
    Z94.7Zustand nach Keratoplastik
    Z95.5Vorhandensein eines Implantates oder Transplantates nach koronarer Gefäßplastik
    Z95.88Vorhandensein von sonstigen kardialen oder vaskulären Implantaten oder Transplantaten
    Z94.6Zustand nach Knochentransplantation
    Z94.9Zustand nach Organ- oder Gewebetransplantation, nicht näher bezeichnet
    Z94.80Zustand nach hämatopoetischer Stammzelltransplantation ohne gegenwärtige Immunsuppression
    Z94.81Zustand nach hämatopoetischer Stammzelltransplantation mit gegenwärtiger Immunsuppression
    Z94.3Zustand nach Herz-Lungen-Transplantation
  • Include codes from ICD10GM where concept IsA Z94


Examples

History of being a Tissue or Organ Recipient present
Example condition where history of transplantation is present

{
    "resourceType": "Condition",
    "id": "history-of-organ-recipient-present",
    "meta": {
        "profile":  [
            "https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/organ-recipient"
        ]
    },
    "category":  [
        {
            "coding":  [
                {
                    "code": "788415003",
                    "system": "http://snomed.info/sct",
                    "display": "Transplant medicine"
                }
            ]
        }
    ],
    "verificationStatus": {
        "coding":  [
            {
                "system": "http://terminology.hl7.org/CodeSystem/condition-ver-status",
                "code": "confirmed",
                "display": "Confirmed"
            },
            {
                "system": "http://snomed.info/sct",
                "code": "410605003",
                "display": "Confirmed present (qualifier value)"
            }
        ]
    },
    "bodySite":  [
        {
            "coding":  [
                {
                    "system": "http://snomed.info/sct",
                    "code": "181268008",
                    "display": "Entire liver"
                }
            ]
        }
    ],
    "clinicalStatus": {
        "coding":  [
            {
                "code": "active",
                "system": "http://terminology.hl7.org/CodeSystem/condition-clinical",
                "display": "Active"
            }
        ]
    },
    "code": {
        "coding":  [
            {
                "code": "161663000",
                "system": "http://snomed.info/sct",
                "display": "History of being a tissue or organ recipient"
            }
        ]
    },
    "subject": {
        "reference": "Patient/gecco-patient"
    },
    "recordedDate": "2020-10-05"
}


History of being a Tissue or Organ Recipient absent
Example condition where history of transplantation is absent

{
    "resourceType": "Condition",
    "id": "history-of-organ-recipient-absent",
    "meta": {
        "profile":  [
            "https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/organ-recipient"
        ]
    },
    "category":  [
        {
            "coding":  [
                {
                    "code": "788415003",
                    "system": "http://snomed.info/sct",
                    "display": "Transplant medicine"
                }
            ]
        }
    ],
    "verificationStatus": {
        "coding":  [
            {
                "system": "http://terminology.hl7.org/CodeSystem/condition-ver-status",
                "code": "refuted",
                "display": "Refuted"
            },
            {
                "system": "http://snomed.info/sct",
                "code": "410594000",
                "display": "Definitely NOT present (qualifier value)"
            }
        ]
    },
    "code": {
        "coding":  [
            {
                "code": "161663000",
                "system": "http://snomed.info/sct",
                "display": "History of being a tissue or organ recipient"
            }
        ]
    },
    "subject": {
        "reference": "Patient/gecco-patient"
    },
    "recordedDate": "2020-10-05"
}


History of being a Tissue or Organ Recipient unknown
Example condition where history of transplantation is unknown

{
    "resourceType": "Condition",
    "id": "history-of-organ-recipient-unknown",
    "meta": {
        "profile":  [
            "https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/organ-recipient"
        ]
    },
    "category":  [
        {
            "coding":  [
                {
                    "code": "788415003",
                    "system": "http://snomed.info/sct",
                    "display": "Transplant medicine"
                }
            ]
        }
    ],
    "modifierExtension":  [
        {
            "url": "https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/uncertainty-of-presence",
            "valueCodeableConcept": {
                "coding":  [
                    {
                        "system": "http://snomed.info/sct",
                        "code": "261665006",
                        "display": "Unknown (qualifier value)"
                    }
                ],
                "text": "Presence of condition is unknown."
            }
        }
    ],
    "code": {
        "coding":  [
            {
                "code": "161663000",
                "system": "http://snomed.info/sct",
                "display": "History of being a tissue or organ recipient"
            }
        ]
    },
    "subject": {
        "reference": "Patient/gecco-patient"
    },
    "recordedDate": "2020-10-05"
}