Chronic lung diseases


Parameter Case Report Form and Response Options

Does the patient suffer from a chronic lung disease? Yes No Unknown
Asthma
COPD
Fibrosis of lung
Pulmonary hypertension
Extreme obesity with alveolar hypoventilation
Sleep apnea
Obstructive sleep apnea syndrome
Cystic fibrosis
Other

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 - Chronic Lung Diseases

Canonical: https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/chronic-lung-diseases

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
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

Valuesets are provided with both SNOMED-CT and ICD-10-GM codes.


Canonical: https://www.netzwerk-universitaetsmedizin.de/fhir/ValueSet/chronic-lung-diseases

ValueSet 'ChronicLungDiseases'

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

Chronic lung diseases in the context of Covid-19

Contact Information

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

This value set includes codes from the following code systems:

  • The following codes from system: SNOMED_CT

    CodeDisplay
    195967001Asthma (disorder)
    13645005Chronic obstructive lung disease (disorder)
    51615001Fibrosis of lung (disorder)
    70995007Pulmonary hypertension (disorder)
    190966007Extreme obesity with alveolar hypoventilation (disorder)
    73430006Sleep apnea (disorder)
    78275009Obstructive sleep apnea syndrome (disorder)
    190905008Cystic fibrosis (disorder)
  • Include codes from SNOMED_CT where concept IsA 106048009


Canonical: https://www.netzwerk-universitaetsmedizin.de/fhir/ValueSet/chronic-lung-diseases-icd

ValueSet 'ChronicLungDiseasesICD'

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

Chronic lung diseases in the context of Covid-19 from ICD-10-GM

Contact Information

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

This value set includes codes from the following code systems:

  • The following codes from system: ICD10GM

    CodeDisplay
    G47.3Schlafapnoe
    G47.31Obstruktives Schlafapnoe-Syndrom
    E66.29Übermäßige Adipositas mit alveolärer Hypoventilation : Grad oder Ausmaß der Adipositas nicht näher bezeichnet
    I27.0Primäre pulmonale Hypertonie
    J84.1Sonstige interstitielle Lungenkrankheiten mit Fibrose
    J60Kohlenbergarbeiter-Pneumokoniose
    J61Pneumokoniose durch Asbest und sonstige anorganische Fasern
    J64Nicht näher bezeichnete Pneumokoniose
    Z87.0Krankheiten des Atmungssystems in der Eigenanamnese
    J44.9Chronische obstruktive Lungenkrankheit, nicht näher bezeichnet
    J45.9Asthma bronchiale, nicht näher bezeichnet
    E84.9Zystische Fibrose, nicht näher bezeichnet
  • Include codes from ICD10GM where concept IsA G47.3Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA E66.2Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA I27Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J62Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J63Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J44Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J45Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA E84Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J66Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA A16Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J67Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J68Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J70Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA P27Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J98Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA G47.3Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA E66.2Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA I27Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J62Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J63Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J44Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J45Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA E84Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J66Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA A16Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J67Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J68Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J70Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA P27Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J98Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA G47.3Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA E66.2Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA I27Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J62Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J63Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J44Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J45Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA E84Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J66Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA A16Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J67Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J68Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J70Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA P27Include codes from ICD10GM where child Exists false
  • Include codes from ICD10GM where concept IsA J98Include codes from ICD10GM where child Exists false


Examples

Chronic lung disease present
Example condition that is confirmed present

{
    "resourceType": "Condition",
    "id": "chronic-lung-diseases-present",
    "meta": {
        "profile":  [
            "https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/chronic-lung-diseases"
        ]
    },
    "category":  [
        {
            "coding":  [
                {
                    "code": "418112009",
                    "system": "http://snomed.info/sct",
                    "display": "Pulmonary 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)"
            }
        ]
    },
    "clinicalStatus": {
        "coding":  [
            {
                "code": "active",
                "system": "http://terminology.hl7.org/CodeSystem/condition-clinical",
                "display": "Active"
            }
        ]
    },
    "code": {
        "coding":  [
            {
                "code": "413839001",
                "system": "http://snomed.info/sct",
                "display": "Chronic lung disease"
            }
        ]
    },
    "subject": {
        "reference": "Patient/gecco-patient"
    },
    "recordedDate": "2020-10-06"
}


Chronic lung disease absent
Example condition that is confirmed absent

{
    "resourceType": "Condition",
    "id": "chronic-lung-disease-cystic-fibrosis-absent",
    "meta": {
        "profile":  [
            "https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/chronic-lung-diseases"
        ]
    },
    "category":  [
        {
            "coding":  [
                {
                    "code": "418112009",
                    "system": "http://snomed.info/sct",
                    "display": "Pulmonary 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": "190905008",
                "system": "http://snomed.info/sct",
                "display": "Cystic fibrosis"
            }
        ]
    },
    "subject": {
        "reference": "Patient/gecco-patient"
    },
    "recordedDate": "2020-10-06"
}


Chronic lung disease unknown
Example condition where the presence is unknown

{
    "resourceType": "Condition",
    "id": "chronic-lung-disease-obstructive-lung-disease-unknown",
    "meta": {
        "profile":  [
            "https://www.netzwerk-universitaetsmedizin.de/fhir/StructureDefinition/chronic-lung-diseases"
        ]
    },
    "category":  [
        {
            "coding":  [
                {
                    "code": "418112009",
                    "system": "http://snomed.info/sct",
                    "display": "Pulmonary 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": "13645005",
                "system": "http://snomed.info/sct",
                "display": "Chronic obstructive lung disease"
            }
        ]
    },
    "subject": {
        "reference": "Patient/gecco-patient"
    },
    "recordedDate": "2020-10-06"
}