NCPI FHIR Implementation Guide v2
0.2.0 - ci-build

NCPI FHIR Implementation Guide v2 - Local Development build (v0.2.0) built by the FHIR (HL7® FHIR® Standard) Build Tools. See the Directory of published versions

Resource Profile: NCPI Research Collection

Official URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/ncpi-research-collection Version: 0.2.0
Draft as of 2025-12-03 Computable Name: NcpiResearchCollection

Collections of research data including, but not limited, to Consortia, Programs, adhoc collections of Studies and datasets among other types of collections.

Basic Definition

The collection element allows for high level organization of objects into various related groups. One common type of collection is a consortium, but other collections can also be established. Items in a collection can include studies, datasets, or other collections (for example, if consortium A becomes a member of consortium B, the collection that represents consortium A can be added as an item in the collection representing consortium B).

Primary Profile Restrictions and Enhancements

  • title must be defined in order for users to understand the purpose of the collection.
  • code must be defined and should be one of the codes from the CodeSystem, CollectionType, when possible.
  • note should contain a meaningful description whenever possible.
  • there must be one or more entries referencing the "contained" resources.
  • When possible, a website should be provided. For Consortium, programs and other entities with formal websites, this should be the one that provides the best overview of the group. For adhoc collections, or those collections that are less formally defined, an online document may be sufficient.

Usages:

You can also check for usages in the FHIR IG Statistics

Formal Views of Profile Content

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

NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. List C 0..* List A list is a curated collection of resources
Constraints: lst-1, lst-2, lst-3
... implicitRules ?!Σ 0..1 uri A set of rules under which this content was created
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:website 0..1 url URL describing the research collection, this can include a formal website, such as the Consortium or Program's website, or to an online document describing the collection.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-web-link
.... extension:label 0..* (Complex) Alias such as acronym and alternate names.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/label-extension
... modifierExtension ?! 0..* Extension Extensions that cannot be ignored
... mode ?!Σ 1..1 code working | snapshot | changes
Binding: ListMode (required): The processing mode that applies to this list.
... title Σ 1..1 string The collection's title.
Example General: Dr. Jane's Patients
... code Σ 1..1 CodeableConcept The type of collection being described.
Binding: Collection Type (extensible)
... note 0..* Annotation The description of the collection.
... entry C 1..* BackboneElement List of references to items included in the list.
.... modifierExtension ?!Σ 0..* Extension Extensions that cannot be ignored even if unrecognized
.... deleted ?!C 0..1 boolean If this item is actually marked as deleted
.... item 1..1 Reference(Resource) Actual entry

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
List.status Base required ListStatus 📍4.0.1 FHIR Std.
List.mode Base required ListMode 📍4.0.1 FHIR Std.
List.code Base extensible Collection Type 📦0.2.0 This IG

Constraints

Id Grade Path(s) Description Expression
dom-2 error List If the resource is contained in another resource, it SHALL NOT contain nested Resources contained.contained.empty()
dom-3 error List 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 contained.where((('#'+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(canonical) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4 error List If 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-5 error List If a resource is contained in another resource, it SHALL NOT have a security label contained.meta.security.empty()
dom-6 best practice List A resource should have narrative for robust management text.`div`.exists()
ele-1 error **ALL** elements All FHIR elements must have a @value or children hasValue() or (children().count() > id.count())
ext-1 error **ALL** extensions Must have either extensions or value[x], not both extension.exists() != value.exists()
lst-1 error List A list can only have an emptyReason if it is empty emptyReason.empty() or entry.empty()
lst-2 error List The deleted flag can only be used if the mode of the list is "changes" mode = 'changes' or entry.deleted.empty()
lst-3 error List An entry date can only be used if the mode of the list is "working" mode = 'working' or entry.date.empty()

This structure is derived from List

NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. List 0..* List A list is a curated collection of resources
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:website 0..1 url URL describing the research collection, this can include a formal website, such as the Consortium or Program's website, or to an online document describing the collection.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-web-link
.... extension:label 0..* (Complex) Alias such as acronym and alternate names.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/label-extension
... title 1..1 string The collection's title.
... code 1..1 CodeableConcept The type of collection being described.
Binding: Collection Type (extensible)
... entry 1..* BackboneElement List of references to items included in the list.

doco Documentation for this format

Terminology Bindings (Differential)

Path Status Usage ValueSet Version Source
List.code Base extensible Collection Type 📦0.2.0 This IG
NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. List C 0..* List A list is a curated collection of resources
Constraints: lst-1, lst-2, lst-3
... id Σ 0..1 id Logical id of this artifact
... 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
This profile does not constrain the narrative in regard to content, language, or traceability to data elements
... contained 0..* Resource Contained, inline Resources
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:website 0..1 url URL describing the research collection, this can include a formal website, such as the Consortium or Program's website, or to an online document describing the collection.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-web-link
.... extension:label 0..* (Complex) Alias such as acronym and alternate names.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/label-extension
... modifierExtension ?! 0..* Extension Extensions that cannot be ignored
... identifier 0..* Identifier Business identifier
... status ?!Σ 1..1 code current | retired | entered-in-error
Binding: ListStatus (required): The current state of the list.
... mode ?!Σ 1..1 code working | snapshot | changes
Binding: ListMode (required): The processing mode that applies to this list.
... title Σ 1..1 string The collection's title.
Example General: Dr. Jane's Patients
... code Σ 1..1 CodeableConcept The type of collection being described.
Binding: Collection Type (extensible)
... subject Σ 0..1 Reference(Patient | Group | Device | Location) If all resources have the same subject
... encounter 0..1 Reference(Encounter) Context in which list created
... date Σ 0..1 dateTime When the list was prepared
... source Σ 0..1 Reference(Practitioner | PractitionerRole | Patient | Device) Who and/or what defined the list contents (aka Author)
... orderedBy 0..1 CodeableConcept What order the list has
Binding: ListOrderCodes (preferred): What order applies to the items in a list.
... note 0..* Annotation The description of the collection.
... entry C 1..* BackboneElement List of references to items included in the list.
.... 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
.... flag 0..1 CodeableConcept Status/Workflow information about this item
Binding: PatientMedicineChangeTypes (example): Codes that provide further information about the reason and meaning of the item in the list.
.... deleted ?!C 0..1 boolean If this item is actually marked as deleted
.... date 0..1 dateTime When item added to list
.... item 1..1 Reference(Resource) Actual entry
... emptyReason C 0..1 CodeableConcept Why list is empty
Binding: ListEmptyReasons (preferred): If a list is empty, why it is empty.

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
List.language Base preferred Common Languages 📍4.0.1 FHIR Std.
List.status Base required ListStatus 📍4.0.1 FHIR Std.
List.mode Base required ListMode 📍4.0.1 FHIR Std.
List.code Base extensible Collection Type 📦0.2.0 This IG
List.orderedBy Base preferred List Order Codes 📍4.0.1 FHIR Std.
List.entry.flag Base example Patient Medicine Change Types 📍4.0.1 FHIR Std.
List.emptyReason Base preferred List Empty Reasons 📍4.0.1 FHIR Std.

Constraints

Id Grade Path(s) Description Expression
dom-2 error List If the resource is contained in another resource, it SHALL NOT contain nested Resources contained.contained.empty()
dom-3 error List 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 contained.where((('#'+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(canonical) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4 error List If 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-5 error List If a resource is contained in another resource, it SHALL NOT have a security label contained.meta.security.empty()
dom-6 best practice List A resource should have narrative for robust management text.`div`.exists()
ele-1 error **ALL** elements All FHIR elements must have a @value or children hasValue() or (children().count() > id.count())
ext-1 error **ALL** extensions Must have either extensions or value[x], not both extension.exists() != value.exists()
lst-1 error List A list can only have an emptyReason if it is empty emptyReason.empty() or entry.empty()
lst-2 error List The deleted flag can only be used if the mode of the list is "changes" mode = 'changes' or entry.deleted.empty()
lst-3 error List An entry date can only be used if the mode of the list is "working" mode = 'working' or entry.date.empty()

This structure is derived from List

Key Elements View

NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. List C 0..* List A list is a curated collection of resources
Constraints: lst-1, lst-2, lst-3
... implicitRules ?!Σ 0..1 uri A set of rules under which this content was created
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:website 0..1 url URL describing the research collection, this can include a formal website, such as the Consortium or Program's website, or to an online document describing the collection.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-web-link
.... extension:label 0..* (Complex) Alias such as acronym and alternate names.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/label-extension
... modifierExtension ?! 0..* Extension Extensions that cannot be ignored
... mode ?!Σ 1..1 code working | snapshot | changes
Binding: ListMode (required): The processing mode that applies to this list.
... title Σ 1..1 string The collection's title.
Example General: Dr. Jane's Patients
... code Σ 1..1 CodeableConcept The type of collection being described.
Binding: Collection Type (extensible)
... note 0..* Annotation The description of the collection.
... entry C 1..* BackboneElement List of references to items included in the list.
.... modifierExtension ?!Σ 0..* Extension Extensions that cannot be ignored even if unrecognized
.... deleted ?!C 0..1 boolean If this item is actually marked as deleted
.... item 1..1 Reference(Resource) Actual entry

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
List.status Base required ListStatus 📍4.0.1 FHIR Std.
List.mode Base required ListMode 📍4.0.1 FHIR Std.
List.code Base extensible Collection Type 📦0.2.0 This IG

Constraints

Id Grade Path(s) Description Expression
dom-2 error List If the resource is contained in another resource, it SHALL NOT contain nested Resources contained.contained.empty()
dom-3 error List 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 contained.where((('#'+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(canonical) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4 error List If 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-5 error List If a resource is contained in another resource, it SHALL NOT have a security label contained.meta.security.empty()
dom-6 best practice List A resource should have narrative for robust management text.`div`.exists()
ele-1 error **ALL** elements All FHIR elements must have a @value or children hasValue() or (children().count() > id.count())
ext-1 error **ALL** extensions Must have either extensions or value[x], not both extension.exists() != value.exists()
lst-1 error List A list can only have an emptyReason if it is empty emptyReason.empty() or entry.empty()
lst-2 error List The deleted flag can only be used if the mode of the list is "changes" mode = 'changes' or entry.deleted.empty()
lst-3 error List An entry date can only be used if the mode of the list is "working" mode = 'working' or entry.date.empty()

Differential View

This structure is derived from List

NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. List 0..* List A list is a curated collection of resources
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:website 0..1 url URL describing the research collection, this can include a formal website, such as the Consortium or Program's website, or to an online document describing the collection.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-web-link
.... extension:label 0..* (Complex) Alias such as acronym and alternate names.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/label-extension
... title 1..1 string The collection's title.
... code 1..1 CodeableConcept The type of collection being described.
Binding: Collection Type (extensible)
... entry 1..* BackboneElement List of references to items included in the list.

doco Documentation for this format

Terminology Bindings (Differential)

Path Status Usage ValueSet Version Source
List.code Base extensible Collection Type 📦0.2.0 This IG

Snapshot View

NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. List C 0..* List A list is a curated collection of resources
Constraints: lst-1, lst-2, lst-3
... id Σ 0..1 id Logical id of this artifact
... 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
This profile does not constrain the narrative in regard to content, language, or traceability to data elements
... contained 0..* Resource Contained, inline Resources
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:website 0..1 url URL describing the research collection, this can include a formal website, such as the Consortium or Program's website, or to an online document describing the collection.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/research-web-link
.... extension:label 0..* (Complex) Alias such as acronym and alternate names.
URL: https://nih-ncpi.github.io/ncpi-fhir-ig-2/StructureDefinition/label-extension
... modifierExtension ?! 0..* Extension Extensions that cannot be ignored
... identifier 0..* Identifier Business identifier
... status ?!Σ 1..1 code current | retired | entered-in-error
Binding: ListStatus (required): The current state of the list.
... mode ?!Σ 1..1 code working | snapshot | changes
Binding: ListMode (required): The processing mode that applies to this list.
... title Σ 1..1 string The collection's title.
Example General: Dr. Jane's Patients
... code Σ 1..1 CodeableConcept The type of collection being described.
Binding: Collection Type (extensible)
... subject Σ 0..1 Reference(Patient | Group | Device | Location) If all resources have the same subject
... encounter 0..1 Reference(Encounter) Context in which list created
... date Σ 0..1 dateTime When the list was prepared
... source Σ 0..1 Reference(Practitioner | PractitionerRole | Patient | Device) Who and/or what defined the list contents (aka Author)
... orderedBy 0..1 CodeableConcept What order the list has
Binding: ListOrderCodes (preferred): What order applies to the items in a list.
... note 0..* Annotation The description of the collection.
... entry C 1..* BackboneElement List of references to items included in the list.
.... 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
.... flag 0..1 CodeableConcept Status/Workflow information about this item
Binding: PatientMedicineChangeTypes (example): Codes that provide further information about the reason and meaning of the item in the list.
.... deleted ?!C 0..1 boolean If this item is actually marked as deleted
.... date 0..1 dateTime When item added to list
.... item 1..1 Reference(Resource) Actual entry
... emptyReason C 0..1 CodeableConcept Why list is empty
Binding: ListEmptyReasons (preferred): If a list is empty, why it is empty.

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
List.language Base preferred Common Languages 📍4.0.1 FHIR Std.
List.status Base required ListStatus 📍4.0.1 FHIR Std.
List.mode Base required ListMode 📍4.0.1 FHIR Std.
List.code Base extensible Collection Type 📦0.2.0 This IG
List.orderedBy Base preferred List Order Codes 📍4.0.1 FHIR Std.
List.entry.flag Base example Patient Medicine Change Types 📍4.0.1 FHIR Std.
List.emptyReason Base preferred List Empty Reasons 📍4.0.1 FHIR Std.

Constraints

Id Grade Path(s) Description Expression
dom-2 error List If the resource is contained in another resource, it SHALL NOT contain nested Resources contained.contained.empty()
dom-3 error List 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 contained.where((('#'+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(canonical) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4 error List If 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-5 error List If a resource is contained in another resource, it SHALL NOT have a security label contained.meta.security.empty()
dom-6 best practice List A resource should have narrative for robust management text.`div`.exists()
ele-1 error **ALL** elements All FHIR elements must have a @value or children hasValue() or (children().count() > id.count())
ext-1 error **ALL** extensions Must have either extensions or value[x], not both extension.exists() != value.exists()
lst-1 error List A list can only have an emptyReason if it is empty emptyReason.empty() or entry.empty()
lst-2 error List The deleted flag can only be used if the mode of the list is "changes" mode = 'changes' or entry.deleted.empty()
lst-3 error List An entry date can only be used if the mode of the list is "working" mode = 'working' or entry.date.empty()

This structure is derived from List

 

Other representations of profile: CSV, Excel, Schematron