NHS North West Genomics
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NHS North West Genomics - Local Development build (v2.2.5) built by the FHIR (HL7® FHIR® Standard) Build Tools. See the Directory of published versions

Data Type Profile: Genomics Pedigree Number

Official URL: https://fhir.nwgenomics.nhs.uk/StructureDefinition/GenomicsPedigreeNumber Version: 2.2.5
Draft as of 2026-11-05 Computable Name: GenomicsPedigreeNumber

Pedigree Number (Family Id). Identifies a family tested together and is used as the Order Group Number (ServiceRequest.requisition, HL7 v2 ORC-4 Placer Group Number) - not a patient identifier.

NHS Data Dictionary and Model

No NHS Data Dictionary entry - this identifier is specific to genomics family studies and is not a nationally-defined NHS data item. See also Medical Record Number for the individual-patient identifier. The Pedigree Number is not a patient identifier: it identifies the family as a whole (Family Genetic Group) and is used as the Order Group Number on each family member's order.

The underlying concept - numbering a family/pedigree as a unit, distinct from numbering each individual - is rooted in general clinical genetics/genetic counselling practice, standardised by the National Society of Genetic Counselors' pedigree nomenclature, not invented by any single genomics programme.

Is this a Genomics England concept specifically? Genomics England's own 100,000 Genomes Project / National Genomic Research Library data model does use a "Pedigree ID"/"Family ID" - e.g. its denovo_cohort_information table records "participant ID, sex, affection status, family ID, pedigree ID" per trio, and a separate rare_diseases_pedigree_member table records each participant's relationship to their family's proband. So the concept is real and used by Genomics England, but it is an application of the wider clinical genetics convention above, not a Genomics-England-specific invention.

Ubiquitous terms: Pedigree Number, Family Id, Kindred Number.

Mapping

Ubiquitous Term HL7 FHIR HL7 v2 OID Notes
Pedigree Number FamilyGeneticGroup.identifier:PedigreeNumber, ServiceRequest.requisition (type = PGN) Placer Group Number (ORC-4) none - locally assigned, system fixed to https://fhir.nhs.uk/Id/genomics-pedigree-number Identifies a family/pedigree tested together, e.g. related Distributed WGS (dWGS) participants. Not a patient identifier

Examples

HL7 v2 EI

PED-2026-0042^R0A

HL7 FHIR Identifier

{
  "type": {
    "coding": [
      {
        "system": "http://terminology.hl7.org/CodeSystem/v2-0203",
        "code": "PGN"
      }
    ]
  },
  "system": "https://fhir.nhs.uk/Id/genomics-pedigree-number",
  "value": "PED-2026-0042",
  "assigner": {
    "identifier": {
      "system": "https://fhir.nhs.uk/Id/ods-organization-code",
      "value": "R0A"
    }
  }
}

Usages:

You can also check for usages in the FHIR IG Statistics

Formal Views of Profile Content

Description Differentials, Snapshots, and other representations.

NameFlagsCard.TypeDescription & Constraints    Filter: doco
Identifier 0..* OrderGroupNumber An identifier intended for computation
Identifier.use This element is a modifier element. This element is included in summaries. 0..1 code usual | official | temp | secondary | old (If known)
Binding: IdentifierUse (required): Identifies the purpose for this identifier, if known .
Identifier.type This element must be supported. This element is included in summaries. 0..1 CodeableConcept Description of identifier
Binding: NW IdentifierType (required)
Required Pattern: 
{
  "coding" : [
    {
      "system" : "http://terminology.hl7.org/CodeSystem/v2-0203",
      "code" : "PGN"
    }
  ]
}
Identifier.system This element must be supported. This element is included in summaries. 0..1 uri Recommended. This may be defined by a EPR/LIMS system.
Fixed Value: https://fhir.nhs.uk/Id/genomics-pedigree-number (no extensions allowed)
Identifier.value This element must be supported. This element is included in summaries. 1..1 string The value MUST be unique to the organisation
Example General: 123456
Identifier.assigner This element must be supported. This element is included in summaries. 0..1 Reference(Organization) Assigning Facility
Identifier.assigner.identifier This element must be supported. This element is included in summaries. 1..1 Identifier Logical reference, when literal reference is not known
Identifier.assigner.identifier.use This element is a modifier element. This element is included in summaries. 0..1 code usual | official | temp | secondary | old (If known)
Binding: IdentifierUse (required): Identifies the purpose for this identifier, if known .
Identifier.assigner.identifier.system This element must be supported. This element is included in summaries. 1..1 uri The namespace for the identifier value
Required Pattern: https://fhir.nhs.uk/Id/ods-organization-code (extensions allowed)
Identifier.assigner.identifier.value This element must be supported. This element is included in summaries. 1..1 string The value that is unique
Example General: 123456
Example Manchester University NHS Foundation Trust: R0A

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
Identifier.use Base required IdentifierUse 📍4.0.1 FHIR Std.
Identifier.type Base required NW IdentifierType 📦2.2.5 This IG
Identifier.assigner.​identifier.use Base required IdentifierUse 📍4.0.1 FHIR Std.

Constraints

Id Grade Path(s) Description Expression

This structure is derived from OrderGroupNumber

NameFlagsCard.TypeDescription & Constraints    Filter: doco
Identifier 0..* OrderGroupNumber An identifier intended for computation
Identifier.system 0..1 uri Recommended. This may be defined by a EPR/LIMS system.
Fixed Value: https://fhir.nhs.uk/Id/genomics-pedigree-number (no extensions allowed)
Identifier.assigner 0..1 Reference(Organization) Assigning Facility

doco Documentation for this format
NameFlagsCard.TypeDescription & Constraints    Filter: doco
Identifier 0..* OrderGroupNumber An identifier intended for computation
Identifier.id 0..1 string Unique id for inter-element referencing
Identifier.extension 0..* Extension Additional content defined by implementations
Slice: Unordered, Open by value:url
Identifier.use This element is a modifier element. This element is included in summaries. 0..1 code usual | official | temp | secondary | old (If known)
Binding: IdentifierUse (required): Identifies the purpose for this identifier, if known .
Identifier.type This element must be supported. This element is included in summaries. 0..1 CodeableConcept Description of identifier
Binding: NW IdentifierType (required)
Required Pattern: 
{
  "coding" : [
    {
      "system" : "http://terminology.hl7.org/CodeSystem/v2-0203",
      "code" : "PGN"
    }
  ]
}
Identifier.system This element must be supported. This element is included in summaries. 0..1 uri Recommended. This may be defined by a EPR/LIMS system.
Fixed Value: https://fhir.nhs.uk/Id/genomics-pedigree-number (no extensions allowed)
Identifier.value This element must be supported. This element is included in summaries. 1..1 string The value MUST be unique to the organisation
Example General: 123456
Identifier.period This element is included in summaries. 0..1 Period Time period when id is/was valid for use
Identifier.assigner This element must be supported. This element is included in summaries. 0..1 Reference(Organization) Assigning Facility
Identifier.assigner.id 0..1 string Unique id for inter-element referencing
Identifier.assigner.extension 0..* Extension Additional content defined by implementations
Slice: Unordered, Open by value:url
Identifier.assigner.reference This element is included in summaries. C 0..1 string Literal reference, Relative, internal or absolute URL
Identifier.assigner.type This element is included in summaries. 0..1 uri Type the reference refers to (e.g. "Patient")
Binding: ResourceType (extensible): Aa resource (or, for logical models, the URI of the logical model).
Identifier.assigner.identifier This element must be supported. This element is included in summaries. 1..1 Identifier Logical reference, when literal reference is not known
Identifier.assigner.identifier.id 0..1 string Unique id for inter-element referencing
Identifier.assigner.identifier.extension 0..* Extension Additional content defined by implementations
Slice: Unordered, Open by value:url
Identifier.assigner.identifier.use This element is a modifier element. This element is included in summaries. 0..1 code usual | official | temp | secondary | old (If known)
Binding: IdentifierUse (required): Identifies the purpose for this identifier, if known .
Identifier.assigner.identifier.type This element is included in summaries. 0..1 CodeableConcept Description of identifier
Binding: Identifier Type Codes (extensible): A coded type for an identifier that can be used to determine which identifier to use for a specific purpose.
Identifier.assigner.identifier.system This element must be supported. This element is included in summaries. 1..1 uri The namespace for the identifier value
Required Pattern: https://fhir.nhs.uk/Id/ods-organization-code (extensions allowed)
Identifier.assigner.identifier.value This element must be supported. This element is included in summaries. 1..1 string The value that is unique
Example General: 123456
Example Manchester University NHS Foundation Trust: R0A
Identifier.assigner.identifier.period This element is included in summaries. 0..1 Period Time period when id is/was valid for use
Identifier.assigner.identifier.assigner This element is included in summaries. 0..1 Reference(Organization) Organization that issued id (may be just text)
Identifier.assigner.display This element is included in summaries. 0..1 string Text alternative for the resource

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
Identifier.use Base required IdentifierUse 📍4.0.1 FHIR Std.
Identifier.type Base required NW IdentifierType 📦2.2.5 This IG
Identifier.assigner.​type Base extensible ResourceType 📍4.0.1 FHIR Std.
Identifier.assigner.​identifier.use Base required IdentifierUse 📍4.0.1 FHIR Std.
Identifier.assigner.​identifier.type Base extensible IdentifierType 📍4.0.1 FHIR Std.

Constraints

Id Grade Path(s) Description Expression

This structure is derived from OrderGroupNumber

Summary

Fixed: 1 element

Key Elements View

NameFlagsCard.TypeDescription & Constraints    Filter: doco
Identifier 0..* OrderGroupNumber An identifier intended for computation
Identifier.use This element is a modifier element. This element is included in summaries. 0..1 code usual | official | temp | secondary | old (If known)
Binding: IdentifierUse (required): Identifies the purpose for this identifier, if known .
Identifier.type This element must be supported. This element is included in summaries. 0..1 CodeableConcept Description of identifier
Binding: NW IdentifierType (required)
Required Pattern: 
{
  "coding" : [
    {
      "system" : "http://terminology.hl7.org/CodeSystem/v2-0203",
      "code" : "PGN"
    }
  ]
}
Identifier.system This element must be supported. This element is included in summaries. 0..1 uri Recommended. This may be defined by a EPR/LIMS system.
Fixed Value: https://fhir.nhs.uk/Id/genomics-pedigree-number (no extensions allowed)
Identifier.value This element must be supported. This element is included in summaries. 1..1 string The value MUST be unique to the organisation
Example General: 123456
Identifier.assigner This element must be supported. This element is included in summaries. 0..1 Reference(Organization) Assigning Facility
Identifier.assigner.identifier This element must be supported. This element is included in summaries. 1..1 Identifier Logical reference, when literal reference is not known
Identifier.assigner.identifier.use This element is a modifier element. This element is included in summaries. 0..1 code usual | official | temp | secondary | old (If known)
Binding: IdentifierUse (required): Identifies the purpose for this identifier, if known .
Identifier.assigner.identifier.system This element must be supported. This element is included in summaries. 1..1 uri The namespace for the identifier value
Required Pattern: https://fhir.nhs.uk/Id/ods-organization-code (extensions allowed)
Identifier.assigner.identifier.value This element must be supported. This element is included in summaries. 1..1 string The value that is unique
Example General: 123456
Example Manchester University NHS Foundation Trust: R0A

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
Identifier.use Base required IdentifierUse 📍4.0.1 FHIR Std.
Identifier.type Base required NW IdentifierType 📦2.2.5 This IG
Identifier.assigner.​identifier.use Base required IdentifierUse 📍4.0.1 FHIR Std.

Constraints

Id Grade Path(s) Description Expression

Differential View

This structure is derived from OrderGroupNumber

NameFlagsCard.TypeDescription & Constraints    Filter: doco
Identifier 0..* OrderGroupNumber An identifier intended for computation
Identifier.system 0..1 uri Recommended. This may be defined by a EPR/LIMS system.
Fixed Value: https://fhir.nhs.uk/Id/genomics-pedigree-number (no extensions allowed)
Identifier.assigner 0..1 Reference(Organization) Assigning Facility

doco Documentation for this format

Snapshot ViewView

NameFlagsCard.TypeDescription & Constraints    Filter: doco
Identifier 0..* OrderGroupNumber An identifier intended for computation
Identifier.id 0..1 string Unique id for inter-element referencing
Identifier.extension 0..* Extension Additional content defined by implementations
Slice: Unordered, Open by value:url
Identifier.use This element is a modifier element. This element is included in summaries. 0..1 code usual | official | temp | secondary | old (If known)
Binding: IdentifierUse (required): Identifies the purpose for this identifier, if known .
Identifier.type This element must be supported. This element is included in summaries. 0..1 CodeableConcept Description of identifier
Binding: NW IdentifierType (required)
Required Pattern: 
{
  "coding" : [
    {
      "system" : "http://terminology.hl7.org/CodeSystem/v2-0203",
      "code" : "PGN"
    }
  ]
}
Identifier.system This element must be supported. This element is included in summaries. 0..1 uri Recommended. This may be defined by a EPR/LIMS system.
Fixed Value: https://fhir.nhs.uk/Id/genomics-pedigree-number (no extensions allowed)
Identifier.value This element must be supported. This element is included in summaries. 1..1 string The value MUST be unique to the organisation
Example General: 123456
Identifier.period This element is included in summaries. 0..1 Period Time period when id is/was valid for use
Identifier.assigner This element must be supported. This element is included in summaries. 0..1 Reference(Organization) Assigning Facility
Identifier.assigner.id 0..1 string Unique id for inter-element referencing
Identifier.assigner.extension 0..* Extension Additional content defined by implementations
Slice: Unordered, Open by value:url
Identifier.assigner.reference This element is included in summaries. C 0..1 string Literal reference, Relative, internal or absolute URL
Identifier.assigner.type This element is included in summaries. 0..1 uri Type the reference refers to (e.g. "Patient")
Binding: ResourceType (extensible): Aa resource (or, for logical models, the URI of the logical model).
Identifier.assigner.identifier This element must be supported. This element is included in summaries. 1..1 Identifier Logical reference, when literal reference is not known
Identifier.assigner.identifier.id 0..1 string Unique id for inter-element referencing
Identifier.assigner.identifier.extension 0..* Extension Additional content defined by implementations
Slice: Unordered, Open by value:url
Identifier.assigner.identifier.use This element is a modifier element. This element is included in summaries. 0..1 code usual | official | temp | secondary | old (If known)
Binding: IdentifierUse (required): Identifies the purpose for this identifier, if known .
Identifier.assigner.identifier.type This element is included in summaries. 0..1 CodeableConcept Description of identifier
Binding: Identifier Type Codes (extensible): A coded type for an identifier that can be used to determine which identifier to use for a specific purpose.
Identifier.assigner.identifier.system This element must be supported. This element is included in summaries. 1..1 uri The namespace for the identifier value
Required Pattern: https://fhir.nhs.uk/Id/ods-organization-code (extensions allowed)
Identifier.assigner.identifier.value This element must be supported. This element is included in summaries. 1..1 string The value that is unique
Example General: 123456
Example Manchester University NHS Foundation Trust: R0A
Identifier.assigner.identifier.period This element is included in summaries. 0..1 Period Time period when id is/was valid for use
Identifier.assigner.identifier.assigner This element is included in summaries. 0..1 Reference(Organization) Organization that issued id (may be just text)
Identifier.assigner.display This element is included in summaries. 0..1 string Text alternative for the resource

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
Identifier.use Base required IdentifierUse 📍4.0.1 FHIR Std.
Identifier.type Base required NW IdentifierType 📦2.2.5 This IG
Identifier.assigner.​type Base extensible ResourceType 📍4.0.1 FHIR Std.
Identifier.assigner.​identifier.use Base required IdentifierUse 📍4.0.1 FHIR Std.
Identifier.assigner.​identifier.type Base extensible IdentifierType 📍4.0.1 FHIR Std.

Constraints

Id Grade Path(s) Description Expression

This structure is derived from OrderGroupNumber

Summary

Fixed: 1 element

 

Other representations of profile: CSV, Excel, Schematron