NCPI FHIR Implementation Guide v2
0.1.0 - ci-build

NCPI FHIR Implementation Guide v2 - Local Development build (v0.1.0) built by the FHIR (HL7® FHIR® Standard) Build Tools. See the Directory of published versions

Resource Profile: NCPI Study Family

Official URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/ncpi-study-family Version: 0.1.0
Draft as of 2025-01-06 Computable Name: NcpiStudyFamily

Study Family

Key Guidelines

Study Family describes a group of Participants that are related. This is not an expression of all individuals in a “family”, but a tool to identify “family members of interest” that were studied. For example, a family trio in a rare disease study does not exclude the existence of other siblings. Family Studies do not require much detail, but there are often attributes of those families that may be of use to researchers.

Added Profile Restrictions

In order to ensure that our resources are interoperable across studies, we have employed a number of restrictions that should make consuming Patient resources more consistent.

  • ID should be a globally unique identifier associated with the family.

TODO: Write Recommended Practices

FHIR Mappings

The following fields from the shared data model are to be mapped into the NCPI Participant as shown below:

Logical Model Property Cardinality NCPI Study Family Mapping Usage Guidance Notes
FamilyID 1..1 id Required It is strongly recommended for the Person ID to be a unique identifier with an appropriate system
externalID 0..* identifier    
FamilyType 0..1 extension FamilyType    
Description 0..1 extension Description    
Consanguinity 0..1 extension Consanguinity    
StudyFamilyFocus 0..1 extension StudyFamilyFocus    

Usage:

Formal Views of Profile Content

Description of Profiles, Differentials, Snapshots and how the different presentations work.

NameFlagsCard.TypeDescription & Constraintsdoco
.. Group C 0..* Group Group of multiple entities
dom-2: If the resource is contained in another resource, it SHALL NOT contain nested Resources
dom-3: If the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource
dom-4: If a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated
dom-5: If a resource is contained in another resource, it SHALL NOT have a security label
dom-6: A resource should have narrative for robust management
grp-1: Can only have members if group is "actual"
... id Σ 1..1 id ParticipantID - Unique participant identifier. System identifier used for internal references.
... implicitRules ?!Σ 0..1 uri A set of rules under which this content was created
ele-1: All FHIR elements must have a @value or children
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
ele-1: All FHIR elements must have a @value or children
ext-1: Must have either extensions or value[x], not both
.... family-type 0..1 CodeableConcept Describes the 'type' of study family, eg, trio.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-type
Binding: Family Types Codes (extensible)
ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource
ext-1: Must have either extensions or value[x], not both
.... description 0..1 markdown Free text describing the study family, such as potential inheritance or details about consanguinity
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/description
ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource
ext-1: Must have either extensions or value[x], not both
.... consanguinity 0..1 CodeableConcept Is there known or suspected consanguinity in this study family?
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/consanguinity
Binding: Consanguinity Value Codes (extensible)
ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource
ext-1: Must have either extensions or value[x], not both
.... study-family-focus 0..1 CodeableConcept What is this study family investigating? EG, a specific condition
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/study-family-focus
ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource
ext-1: Must have either extensions or value[x], not both
... identifier Σ 0..* Identifier External IDs for this participant. Requires scoping.
ele-1: All FHIR elements must have a @value or children
... type Σ 1..1 code person | animal | practitioner | device | medication | substance
Binding: GroupType (required): Types of resources that are part of group.


ele-1: All FHIR elements must have a @value or children
... actual ΣC 1..1 boolean Descriptive or actual
ele-1: All FHIR elements must have a @value or children
... member C 1..* BackboneElement Who or what is in group
ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource
.... modifierExtension ?!Σ 0..* Extension Extensions that cannot be ignored even if unrecognized
ele-1: All FHIR elements must have a @value or children
ext-1: Must have either extensions or value[x], not both
.... entity 1..1 Reference(NCPI Participant) The participant we are describing.
ele-1: All FHIR elements must have a @value or children
..... Slices for extension Content/Rules for all slices
...... family-role 0..1 CodeableConcept The role this individual has in the family, specifically with respect to a proband or index participant
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-role
Binding: FamilyMember (extensible)
ele-1: All FHIR elements must have a @value or children
ext-1: Must have either extensions or value[x], not both

doco Documentation for this format

Terminology Bindings

PathConformanceValueSetURI
Group.typerequiredGroupType
http://hl7.org/fhir/ValueSet/group-type|4.3.0
from the FHIR Standard

Constraints

IdGradePath(s)DetailsRequirements
dom-2errorGroupIf the resource is contained in another resource, it SHALL NOT contain nested Resources
: contained.contained.empty()
dom-3errorGroupIf the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource
: contained.where(((id.exists() and ('#'+id in (%resource.descendants().reference | %resource.descendants().as(canonical) | %resource.descendants().as(uri) | %resource.descendants().as(url)))) or descendants().where(reference = '#').exists() or descendants().where(as(canonical) = '#').exists() or descendants().where(as(uri) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4errorGroupIf a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated
: contained.meta.versionId.empty() and contained.meta.lastUpdated.empty()
dom-5errorGroupIf a resource is contained in another resource, it SHALL NOT have a security label
: contained.meta.security.empty()
dom-6best practiceGroupA resource should have narrative for robust management
: text.`div`.exists()
ele-1error**ALL** elementsAll FHIR elements must have a @value or children
: hasValue() or (children().count() > id.count())
ext-1error**ALL** extensionsMust have either extensions or value[x], not both
: extension.exists() != value.exists()
grp-1errorGroupCan only have members if group is "actual"
: member.empty() or (actual = true)

This structure is derived from Group

NameFlagsCard.TypeDescription & Constraintsdoco
.. Group 0..* Group Group of multiple entities
... id 1..1 id ParticipantID - Unique participant identifier. System identifier used for internal references.
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... family-type 0..1 CodeableConcept Describes the 'type' of study family, eg, trio.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-type
Binding: Family Types Codes (extensible)
.... description 0..1 markdown Free text describing the study family, such as potential inheritance or details about consanguinity
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/description
.... consanguinity 0..1 CodeableConcept Is there known or suspected consanguinity in this study family?
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/consanguinity
Binding: Consanguinity Value Codes (extensible)
.... study-family-focus 0..1 CodeableConcept What is this study family investigating? EG, a specific condition
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/study-family-focus
... identifier 0..* Identifier External IDs for this participant. Requires scoping.
.... entity 1..1 Reference(NCPI Participant) The participant we are describing.
..... Slices for extension Content/Rules for all slices
...... family-role 0..1 CodeableConcept The role this individual has in the family, specifically with respect to a proband or index participant
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-role
Binding: FamilyMember (extensible)

doco Documentation for this format
NameFlagsCard.TypeDescription & Constraintsdoco
.. Group C 0..* Group Group of multiple entities
grp-1: Can only have members if group is "actual"
... id Σ 1..1 id ParticipantID - Unique participant identifier. System identifier used for internal references.
... meta Σ 0..1 Meta Metadata about the resource
... implicitRules ?!Σ 0..1 uri A set of rules under which this content was created
... text 0..1 Narrative Text summary of the resource, for human interpretation
... contained 0..* Resource Contained, inline Resources
dom-r4b: Containing new R4B resources within R4 resources may cause interoperability issues if instances are shared with R4 systems
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... family-type 0..1 CodeableConcept Describes the 'type' of study family, eg, trio.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-type
Binding: Family Types Codes (extensible)
.... description 0..1 markdown Free text describing the study family, such as potential inheritance or details about consanguinity
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/description
.... consanguinity 0..1 CodeableConcept Is there known or suspected consanguinity in this study family?
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/consanguinity
Binding: Consanguinity Value Codes (extensible)
.... study-family-focus 0..1 CodeableConcept What is this study family investigating? EG, a specific condition
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/study-family-focus
... modifierExtension ?! 0..* Extension Extensions that cannot be ignored
... identifier Σ 0..* Identifier External IDs for this participant. Requires scoping.
... active Σ 0..1 boolean Whether this group's record is in active use
... type Σ 1..1 code person | animal | practitioner | device | medication | substance
Binding: GroupType (required): Types of resources that are part of group.

... actual ΣC 1..1 boolean Descriptive or actual
... code Σ 0..1 CodeableConcept Kind of Group members
Binding Description (No ValueSet): (example): Kind of particular resource; e.g. cow, syringe, lake, etc.

... name Σ 0..1 string Label for Group
... quantity Σ 0..1 unsignedInt Number of members
... managingEntity Σ 0..1 Reference(Organization | RelatedPerson | Practitioner | PractitionerRole) Entity that is the custodian of the Group's definition
... characteristic 0..* BackboneElement Include / Exclude group members by Trait
.... id 0..1 string Unique id for inter-element referencing
.... extension 0..* Extension Additional content defined by implementations
.... modifierExtension ?!Σ 0..* Extension Extensions that cannot be ignored even if unrecognized
.... code 1..1 CodeableConcept Kind of characteristic
Binding Description (No ValueSet): (example): List of characteristics used to describe group members; e.g. gender, age, owner, location, etc.

.... value[x] 1..1 Value held by characteristic
Binding Description (No ValueSet): (example): Value of descriptive member characteristic; e.g. red, male, pneumonia, Caucasian, etc.

..... valueCodeableConcept CodeableConcept
..... valueBoolean boolean
..... valueQuantity Quantity
..... valueRange Range
..... valueReference Reference(Any)
.... exclude 1..1 boolean Group includes or excludes
.... period 0..1 Period Period over which characteristic is tested
... member C 1..* BackboneElement Who or what is in group
.... id 0..1 string Unique id for inter-element referencing
.... extension 0..* Extension Additional content defined by implementations
.... modifierExtension ?!Σ 0..* Extension Extensions that cannot be ignored even if unrecognized
.... entity 1..1 Reference(NCPI Participant) The participant we are describing.
..... id 0..1 id Unique id for inter-element referencing
..... Slices for extension 0..* Extension Additional content defined by implementations
Slice: Unordered, Open by value:url
...... family-role 0..1 CodeableConcept The role this individual has in the family, specifically with respect to a proband or index participant
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-role
Binding: FamilyMember (extensible)
..... reference ΣC 0..1 string Literal reference, Relative, internal or absolute URL
..... type Σ 0..1 uri Type the reference refers to (e.g. "Patient")
Binding: ResourceType (extensible)
..... identifier Σ 0..1 Identifier Logical reference, when literal reference is not known
..... display Σ 0..1 string Text alternative for the resource
.... period 0..1 Period Period member belonged to the group
.... inactive 0..1 boolean If member is no longer in group

doco Documentation for this format

Terminology Bindings

PathConformanceValueSetURI
Group.languagepreferredCommonLanguages
http://hl7.org/fhir/ValueSet/languages
from the FHIR Standard
Additional Bindings Purpose
AllLanguages Max Binding
Group.typerequiredGroupType
http://hl7.org/fhir/ValueSet/group-type|4.3.0
from the FHIR Standard
Group.codeexample
Group.characteristic.codeexample
Group.characteristic.value[x]example
Group.member.entity.typeextensibleResourceType
http://hl7.org/fhir/ValueSet/resource-types
from the FHIR Standard

Constraints

IdGradePath(s)DetailsRequirements
dom-2errorGroupIf the resource is contained in another resource, it SHALL NOT contain nested Resources
: contained.contained.empty()
dom-3errorGroupIf the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource
: contained.where(((id.exists() and ('#'+id in (%resource.descendants().reference | %resource.descendants().as(canonical) | %resource.descendants().as(uri) | %resource.descendants().as(url)))) or descendants().where(reference = '#').exists() or descendants().where(as(canonical) = '#').exists() or descendants().where(as(uri) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4errorGroupIf a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated
: contained.meta.versionId.empty() and contained.meta.lastUpdated.empty()
dom-5errorGroupIf a resource is contained in another resource, it SHALL NOT have a security label
: contained.meta.security.empty()
dom-6best practiceGroupA resource should have narrative for robust management
: text.`div`.exists()
dom-r4bwarningGroup.containedContaining new R4B resources within R4 resources may cause interoperability issues if instances are shared with R4 systems
: ($this is Citation or $this is Evidence or $this is EvidenceReport or $this is EvidenceVariable or $this is MedicinalProductDefinition or $this is PackagedProductDefinition or $this is AdministrableProductDefinition or $this is Ingredient or $this is ClinicalUseDefinition or $this is RegulatedAuthorization or $this is SubstanceDefinition or $this is SubscriptionStatus or $this is SubscriptionTopic) implies (%resource is Citation or %resource is Evidence or %resource is EvidenceReport or %resource is EvidenceVariable or %resource is MedicinalProductDefinition or %resource is PackagedProductDefinition or %resource is AdministrableProductDefinition or %resource is Ingredient or %resource is ClinicalUseDefinition or %resource is RegulatedAuthorization or %resource is SubstanceDefinition or %resource is SubscriptionStatus or %resource is SubscriptionTopic)
ele-1error**ALL** elementsAll FHIR elements must have a @value or children
: hasValue() or (children().count() > id.count())
ext-1error**ALL** extensionsMust have either extensions or value[x], not both
: extension.exists() != value.exists()
grp-1errorGroupCan only have members if group is "actual"
: member.empty() or (actual = true)

Key Elements View

NameFlagsCard.TypeDescription & Constraintsdoco
.. Group C 0..* Group Group of multiple entities
dom-2: If the resource is contained in another resource, it SHALL NOT contain nested Resources
dom-3: If the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource
dom-4: If a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated
dom-5: If a resource is contained in another resource, it SHALL NOT have a security label
dom-6: A resource should have narrative for robust management
grp-1: Can only have members if group is "actual"
... id Σ 1..1 id ParticipantID - Unique participant identifier. System identifier used for internal references.
... implicitRules ?!Σ 0..1 uri A set of rules under which this content was created
ele-1: All FHIR elements must have a @value or children
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
ele-1: All FHIR elements must have a @value or children
ext-1: Must have either extensions or value[x], not both
.... family-type 0..1 CodeableConcept Describes the 'type' of study family, eg, trio.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-type
Binding: Family Types Codes (extensible)
ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource
ext-1: Must have either extensions or value[x], not both
.... description 0..1 markdown Free text describing the study family, such as potential inheritance or details about consanguinity
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/description
ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource
ext-1: Must have either extensions or value[x], not both
.... consanguinity 0..1 CodeableConcept Is there known or suspected consanguinity in this study family?
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/consanguinity
Binding: Consanguinity Value Codes (extensible)
ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource
ext-1: Must have either extensions or value[x], not both
.... study-family-focus 0..1 CodeableConcept What is this study family investigating? EG, a specific condition
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/study-family-focus
ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource
ext-1: Must have either extensions or value[x], not both
... identifier Σ 0..* Identifier External IDs for this participant. Requires scoping.
ele-1: All FHIR elements must have a @value or children
... type Σ 1..1 code person | animal | practitioner | device | medication | substance
Binding: GroupType (required): Types of resources that are part of group.


ele-1: All FHIR elements must have a @value or children
... actual ΣC 1..1 boolean Descriptive or actual
ele-1: All FHIR elements must have a @value or children
... member C 1..* BackboneElement Who or what is in group
ele-1: All FHIR elements must have a @value or children unless an empty Parameters resource
.... modifierExtension ?!Σ 0..* Extension Extensions that cannot be ignored even if unrecognized
ele-1: All FHIR elements must have a @value or children
ext-1: Must have either extensions or value[x], not both
.... entity 1..1 Reference(NCPI Participant) The participant we are describing.
ele-1: All FHIR elements must have a @value or children
..... Slices for extension Content/Rules for all slices
...... family-role 0..1 CodeableConcept The role this individual has in the family, specifically with respect to a proband or index participant
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-role
Binding: FamilyMember (extensible)
ele-1: All FHIR elements must have a @value or children
ext-1: Must have either extensions or value[x], not both

doco Documentation for this format

Terminology Bindings

PathConformanceValueSetURI
Group.typerequiredGroupType
http://hl7.org/fhir/ValueSet/group-type|4.3.0
from the FHIR Standard

Constraints

IdGradePath(s)DetailsRequirements
dom-2errorGroupIf the resource is contained in another resource, it SHALL NOT contain nested Resources
: contained.contained.empty()
dom-3errorGroupIf the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource
: contained.where(((id.exists() and ('#'+id in (%resource.descendants().reference | %resource.descendants().as(canonical) | %resource.descendants().as(uri) | %resource.descendants().as(url)))) or descendants().where(reference = '#').exists() or descendants().where(as(canonical) = '#').exists() or descendants().where(as(uri) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4errorGroupIf a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated
: contained.meta.versionId.empty() and contained.meta.lastUpdated.empty()
dom-5errorGroupIf a resource is contained in another resource, it SHALL NOT have a security label
: contained.meta.security.empty()
dom-6best practiceGroupA resource should have narrative for robust management
: text.`div`.exists()
ele-1error**ALL** elementsAll FHIR elements must have a @value or children
: hasValue() or (children().count() > id.count())
ext-1error**ALL** extensionsMust have either extensions or value[x], not both
: extension.exists() != value.exists()
grp-1errorGroupCan only have members if group is "actual"
: member.empty() or (actual = true)

Differential View

This structure is derived from Group

NameFlagsCard.TypeDescription & Constraintsdoco
.. Group 0..* Group Group of multiple entities
... id 1..1 id ParticipantID - Unique participant identifier. System identifier used for internal references.
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... family-type 0..1 CodeableConcept Describes the 'type' of study family, eg, trio.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-type
Binding: Family Types Codes (extensible)
.... description 0..1 markdown Free text describing the study family, such as potential inheritance or details about consanguinity
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/description
.... consanguinity 0..1 CodeableConcept Is there known or suspected consanguinity in this study family?
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/consanguinity
Binding: Consanguinity Value Codes (extensible)
.... study-family-focus 0..1 CodeableConcept What is this study family investigating? EG, a specific condition
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/study-family-focus
... identifier 0..* Identifier External IDs for this participant. Requires scoping.
.... entity 1..1 Reference(NCPI Participant) The participant we are describing.
..... Slices for extension Content/Rules for all slices
...... family-role 0..1 CodeableConcept The role this individual has in the family, specifically with respect to a proband or index participant
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-role
Binding: FamilyMember (extensible)

doco Documentation for this format

Snapshot View

NameFlagsCard.TypeDescription & Constraintsdoco
.. Group C 0..* Group Group of multiple entities
grp-1: Can only have members if group is "actual"
... id Σ 1..1 id ParticipantID - Unique participant identifier. System identifier used for internal references.
... meta Σ 0..1 Meta Metadata about the resource
... implicitRules ?!Σ 0..1 uri A set of rules under which this content was created
... text 0..1 Narrative Text summary of the resource, for human interpretation
... contained 0..* Resource Contained, inline Resources
dom-r4b: Containing new R4B resources within R4 resources may cause interoperability issues if instances are shared with R4 systems
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... family-type 0..1 CodeableConcept Describes the 'type' of study family, eg, trio.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-type
Binding: Family Types Codes (extensible)
.... description 0..1 markdown Free text describing the study family, such as potential inheritance or details about consanguinity
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/description
.... consanguinity 0..1 CodeableConcept Is there known or suspected consanguinity in this study family?
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/consanguinity
Binding: Consanguinity Value Codes (extensible)
.... study-family-focus 0..1 CodeableConcept What is this study family investigating? EG, a specific condition
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/study-family-focus
... modifierExtension ?! 0..* Extension Extensions that cannot be ignored
... identifier Σ 0..* Identifier External IDs for this participant. Requires scoping.
... active Σ 0..1 boolean Whether this group's record is in active use
... type Σ 1..1 code person | animal | practitioner | device | medication | substance
Binding: GroupType (required): Types of resources that are part of group.

... actual ΣC 1..1 boolean Descriptive or actual
... code Σ 0..1 CodeableConcept Kind of Group members
Binding Description (No ValueSet): (example): Kind of particular resource; e.g. cow, syringe, lake, etc.

... name Σ 0..1 string Label for Group
... quantity Σ 0..1 unsignedInt Number of members
... managingEntity Σ 0..1 Reference(Organization | RelatedPerson | Practitioner | PractitionerRole) Entity that is the custodian of the Group's definition
... characteristic 0..* BackboneElement Include / Exclude group members by Trait
.... id 0..1 string Unique id for inter-element referencing
.... extension 0..* Extension Additional content defined by implementations
.... modifierExtension ?!Σ 0..* Extension Extensions that cannot be ignored even if unrecognized
.... code 1..1 CodeableConcept Kind of characteristic
Binding Description (No ValueSet): (example): List of characteristics used to describe group members; e.g. gender, age, owner, location, etc.

.... value[x] 1..1 Value held by characteristic
Binding Description (No ValueSet): (example): Value of descriptive member characteristic; e.g. red, male, pneumonia, Caucasian, etc.

..... valueCodeableConcept CodeableConcept
..... valueBoolean boolean
..... valueQuantity Quantity
..... valueRange Range
..... valueReference Reference(Any)
.... exclude 1..1 boolean Group includes or excludes
.... period 0..1 Period Period over which characteristic is tested
... member C 1..* BackboneElement Who or what is in group
.... id 0..1 string Unique id for inter-element referencing
.... extension 0..* Extension Additional content defined by implementations
.... modifierExtension ?!Σ 0..* Extension Extensions that cannot be ignored even if unrecognized
.... entity 1..1 Reference(NCPI Participant) The participant we are describing.
..... id 0..1 id Unique id for inter-element referencing
..... Slices for extension 0..* Extension Additional content defined by implementations
Slice: Unordered, Open by value:url
...... family-role 0..1 CodeableConcept The role this individual has in the family, specifically with respect to a proband or index participant
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/family-role
Binding: FamilyMember (extensible)
..... reference ΣC 0..1 string Literal reference, Relative, internal or absolute URL
..... type Σ 0..1 uri Type the reference refers to (e.g. "Patient")
Binding: ResourceType (extensible)
..... identifier Σ 0..1 Identifier Logical reference, when literal reference is not known
..... display Σ 0..1 string Text alternative for the resource
.... period 0..1 Period Period member belonged to the group
.... inactive 0..1 boolean If member is no longer in group

doco Documentation for this format

Terminology Bindings

PathConformanceValueSetURI
Group.languagepreferredCommonLanguages
http://hl7.org/fhir/ValueSet/languages
from the FHIR Standard
Additional Bindings Purpose
AllLanguages Max Binding
Group.typerequiredGroupType
http://hl7.org/fhir/ValueSet/group-type|4.3.0
from the FHIR Standard
Group.codeexample
Group.characteristic.codeexample
Group.characteristic.value[x]example
Group.member.entity.typeextensibleResourceType
http://hl7.org/fhir/ValueSet/resource-types
from the FHIR Standard

Constraints

IdGradePath(s)DetailsRequirements
dom-2errorGroupIf the resource is contained in another resource, it SHALL NOT contain nested Resources
: contained.contained.empty()
dom-3errorGroupIf the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource
: contained.where(((id.exists() and ('#'+id in (%resource.descendants().reference | %resource.descendants().as(canonical) | %resource.descendants().as(uri) | %resource.descendants().as(url)))) or descendants().where(reference = '#').exists() or descendants().where(as(canonical) = '#').exists() or descendants().where(as(uri) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4errorGroupIf a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated
: contained.meta.versionId.empty() and contained.meta.lastUpdated.empty()
dom-5errorGroupIf a resource is contained in another resource, it SHALL NOT have a security label
: contained.meta.security.empty()
dom-6best practiceGroupA resource should have narrative for robust management
: text.`div`.exists()
dom-r4bwarningGroup.containedContaining new R4B resources within R4 resources may cause interoperability issues if instances are shared with R4 systems
: ($this is Citation or $this is Evidence or $this is EvidenceReport or $this is EvidenceVariable or $this is MedicinalProductDefinition or $this is PackagedProductDefinition or $this is AdministrableProductDefinition or $this is Ingredient or $this is ClinicalUseDefinition or $this is RegulatedAuthorization or $this is SubstanceDefinition or $this is SubscriptionStatus or $this is SubscriptionTopic) implies (%resource is Citation or %resource is Evidence or %resource is EvidenceReport or %resource is EvidenceVariable or %resource is MedicinalProductDefinition or %resource is PackagedProductDefinition or %resource is AdministrableProductDefinition or %resource is Ingredient or %resource is ClinicalUseDefinition or %resource is RegulatedAuthorization or %resource is SubstanceDefinition or %resource is SubscriptionStatus or %resource is SubscriptionTopic)
ele-1error**ALL** elementsAll FHIR elements must have a @value or children
: hasValue() or (children().count() > id.count())
ext-1error**ALL** extensionsMust have either extensions or value[x], not both
: extension.exists() != value.exists()
grp-1errorGroupCan only have members if group is "actual"
: member.empty() or (actual = true)

 

Other representations of profile: CSV, Excel, Schematron

Notes: