Notice
- Important: This guidance is under active development by NHS England and content may be added or updated on a regular basis.
- This Implementation Guide is currently in Draft and SHOULD NOT be used for development or active implementation without express direction from the NHS England Genomics Unit.
QuestionnaireResponse
QuestionnaireResponse-Genomic Testing
Example of a filled RoD Form.
| QuestionnaireResponse |
| id : NHSDigital-QuestionnaireResponse-Genomics-Example |
| questionnaire : https://fhir.nhs.uk/Questionnaire/NHSDigital-Questionnaire-Genomics-Example |
| status : completed |
| basedOn |
| reference : urn:uuid:a40c7ddc-2897-4e3c-bae6-88500e080229 |
| subject |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9999999999 |
| display : A Patient |
| authored : 2022-12-20 |
| author |
| type : PractitionerRole |
| identifier |
| system : https://fhir.nhs.uk/Id/sds-role-profile-id |
| value : 921600556514 |
| source |
| type : Patient |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9999999999 |
| item |
| linkId : patientDetails |
| text : Patient Details |
| item |
| linkId : givenName |
| text : First Name |
| answer |
| value : James |
| item |
| linkId : familyName |
| text : Last Name |
| answer |
| value : Goldsmith |
| item |
| linkId : nhs_Number |
| text : NHS number (or postcode if not not known) |
| answer |
| value : 9999999999 |
| item |
| linkId : birthDate |
| text : Date of Birth |
| answer |
| value : 1980-12-01 |
| item |
| linkId : declaration4 |
| text : Confirmation of Your Genomic Test and Research Choices |
| item |
| linkId : confirmation |
| text : I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below. |
| item |
| linkId : researchConfirmation1 |
| text : I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below |
| answer |
| value : True |
| item |
| linkId : researchConfirmation2 |
| text : I agree that my data and remainder sample may contribute to the National Genomic Research Library |
| answer |
| value : False |
| item |
| linkId : isRespondentAttorney |
| text : Are you completing this form on behalf of someone? |
| answer |
| value : False |
| item |
| linkId : patientValidation |
| text : Patient Validation |
| item |
| linkId : patientNamecombined |
| text : Patient Name |
| answer |
| value : James Goldsmith |
| item |
| linkId : patientSignature |
| text : Signature |
| answer |
| value : JamesG |
| item |
| linkId : datePatientCompletedForm |
| text : Date |
| answer |
| value : 2022-12-08 |
| item |
| linkId : declaration5 |
| text : Healthcare professional use only |
| item |
| linkId : healthcareProfessional |
| text : To be completed by the healthcare professional recording the patient’s choices. |
| item |
| linkId : patientCategory |
| text : Patient category |
| answer |
| value |
| system : https://fhir.nhs.uk/CodeSystem/patient-choice-category-genomics |
| code : adult-own-choice |
| display : Adult(made their own choice) |
| item |
| linkId : testType |
| text : Test type |
| answer |
| value |
| system : https://fhir.nhs.uk/CodeSystem/test-type-genomics |
| code : C-WGS |
| display : Cancer (paired tumour normal) -WGS |
| item |
| linkId : remoteConsent |
| text : Remote consent, recorded remotely by clinician, no patient signature |
| answer |
| value : True |
| item |
| linkId : responsibleClinician |
| text : Responsible clinician |
| answer |
| value : Mathew Arnold |
| item |
| linkId : patientMRN |
| text : Hospital number |
| answer |
| value : 999999999 |
| item |
| linkId : healthcareProfessionalName |
| text : Healthcare professional name |
| answer |
| value : Mathew Arnold |
| item |
| linkId : healthcareProfessionalSignature |
| text : Signature |
| answer |
| value : MathewA |
| item |
| linkId : datehealthcareProfessionalCompletedForm |
| text : Date |
| answer |
| value : 2022-12-09 |
{
],
},
},
}
},
}
},
{
{
},
{
},
{
]
},
{
}
]
},
{
{
"text": "I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below.",
{
"text": "I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below",
]
},
{
"text": "I agree that my data and remainder sample may contribute to the National Genomic Research Library",
]
}
]
}
]
},
{
]
},
{
{
]
},
{
},
{
]
}
]
},
{
{
{
{
}
}
]
},
{
{
}
}
]
},
{
]
},
{
]
},
{
},
{
]
},
{
]
},
{
]
}
]
}
]
}
]
}
</basedOn>
<questionnaire value="https://fhir.nhs.uk/Questionnaire/NHSDigital-Questionnaire-Genomics-Example" />
</identifier>
</subject>
</identifier>
</author>
</identifier>
</source>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
<text value="I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below." />
<text value="I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below" />
</answer>
</item>
<text value="I agree that my data and remainder sample may contribute to the National Genomic Research Library" />
</answer>
</item>
</item>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</valueCoding>
</answer>
</item>
</valueCoding>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</item>
</QuestionnaireResponse>
QuestionnaireResponse-RoD-ConsulteeDeclarationForm-Example
Example of a filled Consultee Declaration Form.
| QuestionnaireResponse |
| id : QuestionnaireResponse-RoD-ConsulteeDeclarationForm-Example |
| questionnaire : https://fhir.nhs.uk/Questionnaire/Questionnaire-RoD-ConsulteeDeclarationForm-Example |
| status : completed |
| basedOn |
| reference : ServiceRequest/ServiceRequest-WGSTestOrderForm-TrioTestingProband-Example |
| subject |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9449307539 |
| display : A Patient |
| authored : 2024-01-25 |
| author |
| type : PractitionerRole |
| identifier |
| system : https://fhir.nhs.uk/Id/sds-role-profile-id |
| value : 999999999999 |
| source |
| type : PractitionerRole |
| identifier |
| system : https://fhir.nhs.uk/Id/sds-role-profile-id |
| value : 999999999999 |
| item |
| linkId : patientDetails |
| text : Patient Details |
| item |
| linkId : givenName |
| text : First Name |
| answer |
| value : Phoebe |
| item |
| linkId : familyName |
| text : Last Name |
| answer |
| value : Smitham |
| item |
| linkId : nhs_Number |
| text : NHS number (or postcode if not not known) |
| answer |
| value : 9449307539 |
| item |
| linkId : birthDate |
| text : Date of Birth |
| answer |
| value : 2013-09-27 |
| item |
| linkId : confirmationOfDecision |
| text : Confirmation of decision |
| item |
| linkId : confirmation |
| text : I confirm that I have read and had the opportunity to discuss information about acting as a consultee for the person lacking capacity. My research choices are indicated below. |
| item |
| linkId : choiceConfirmation1 |
| text : I have been consulted about this person’s participation in the National Genomic Research Library |
| answer |
| value : True |
| item |
| linkId : choiceConfirmation2 |
| text : I am willing to accept the role of consultee for this person |
| answer |
| value : True |
| item |
| linkId : isRemoteConsentTrue |
| text : Consent obtained remotely, no consultee signature |
| answer |
| value : False |
| item |
| linkId : consulteeValidation |
| text : Consultee Validation |
| item |
| linkId : consulteeNamecombined |
| text : Your Name(i.e, the Consultee) |
| answer |
| value : James Goldsmith |
| item |
| linkId : dateConsulteeCompletedForm |
| text : Date |
| answer |
| value : 2023-09-15 |
| item |
| linkId : consulteeSignature |
| text : Signature |
| answer |
| value : JamesG |
| item |
| linkId : healthcareProfessionalValidation |
| text : Healthcare professional use only |
| item |
| linkId : healthcareProfessional |
| text : To be completed by the healthcare professional recording the consultee’s choices. |
| item |
| linkId : healthcareProfessionalName |
| text : Healthcare professional name |
| answer |
| value : Mathew Arnold |
| item |
| linkId : healthcareProfessionalSignature |
| text : Signature |
| answer |
| value : MathewA |
| item |
| linkId : datehealthcareProfessionalCompletedForm |
| text : Date |
| answer |
| value : 2023-09-15 |
{
"questionnaire": "https://fhir.nhs.uk/Questionnaire/Questionnaire-RoD-ConsulteeDeclarationForm-Example",
],
},
},
}
},
}
},
{
{
},
{
},
{
]
},
{
}
]
},
{
{
"text": "I confirm that I have read and had the opportunity to discuss information about acting as a consultee for the person lacking capacity. My research choices are indicated below.",
{
"text": "I have been consulted about this person’s participation in the National Genomic Research Library",
]
},
{
]
}
]
}
]
},
{
]
},
{
{
]
},
{
]
},
{
}
]
},
{
{
{
]
},
{
]
},
{
]
}
]
}
]
}
]
}
</basedOn>
<questionnaire value="https://fhir.nhs.uk/Questionnaire/Questionnaire-RoD-ConsulteeDeclarationForm-Example" />
</identifier>
</subject>
</identifier>
</author>
</identifier>
</source>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
<text value="I confirm that I have read and had the opportunity to discuss information about acting as a consultee for the person lacking capacity. My research choices are indicated below." />
<text value="I have been consulted about this person’s participation in the National Genomic Research Library" />
</answer>
</item>
</answer>
</item>
</item>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</item>
</QuestionnaireResponse>
QuestionnaireResponse-RoD-Example
Example of a filled RoD Form.
| QuestionnaireResponse |
| id : QuestionnaireResponse-RoD-Example |
| questionnaire : https://fhir.nhs.uk/Questionnaire/NHSDigital-Questionnaire-Genomics-Example |
| status : completed |
| subject |
| reference : Patient/Patient-LindsaySorrell-Example |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9449307946 |
| authored : 2023-08-21 |
| author |
| identifier |
| system : https://fhir.nhs.uk/Id/sds-role-profile-id |
| value : 9999999996 |
| display : Test AHP |
| source |
| reference : Patient/Patient-LindsaySorrell-Example |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9449307946 |
| item |
| linkId : patientDetails |
| text : Patient Details |
| item |
| linkId : givenName |
| text : First Name |
| answer |
| value : Lindsay |
| item |
| linkId : familyName |
| text : Last Name |
| answer |
| value : Sorrell |
| item |
| linkId : nhs_Number |
| text : NHS number (or postcode if not not known) |
| answer |
| value : 944 9307 946 |
| item |
| linkId : birthDate |
| text : Date of Birth |
| answer |
| value : 2011-04-12 |
| item |
| linkId : declaration4 |
| text : Confirmation of Your Genomic Test and Research Choices |
| item |
| linkId : confirmation |
| text : I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below. |
| item |
| linkId : researchConfirmation1 |
| text : I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below |
| answer |
| value : True |
| item |
| linkId : researchConfirmation2 |
| text : I agree that my data and remainder sample may contribute to the National Genomic Research Library |
| answer |
| value : True |
| item |
| linkId : isRespondentAttorney |
| text : Are you completing this form on behalf of someone? |
| answer |
| value : False |
| item |
| linkId : patientValidation |
| text : Patient Validation |
| item |
| linkId : patientNamecombined |
| text : Patient Name |
| answer |
| value : Mr. Lindsay Sorrell |
| item |
| linkId : patientSignature |
| text : Signature |
| answer |
| value : NA |
| item |
| linkId : datePatientCompletedForm |
| text : Date |
| answer |
| value : 2023-08-21 |
| item |
| linkId : declaration5 |
| text : Healthcare professional use only |
| item |
| linkId : healthcareProfessional |
| text : To be completed by the healthcare professional recording the patient’s choices. |
| item |
| linkId : patientCategory |
| text : Patient category |
| answer |
| value |
| system : https://fhir.nhs.uk/CodeSystem/patient-choice-category-genomics |
| code : adult-own-choice |
| display : Adult(made their own choice) |
| item |
| linkId : testType |
| text : Test type |
| answer |
| value |
| system : https://fhir.nhs.uk/CodeSystem/test-type-genomics |
| code : RID-WGS |
| display : Rare and Inherited Diseases - WGS |
| item |
| linkId : remoteConsent |
| text : Remote consent, recorded remotely by clinician, no patient signature |
| answer |
| value : True |
| item |
| linkId : responsibleClinician |
| text : Responsible clinician |
| answer |
| value : Dr Hazel Smith |
| item |
| linkId : patientMRN |
| text : Hospital number |
| answer |
| value : RWT14789 |
| item |
| linkId : healthcareProfessionalName |
| text : Healthcare professional name |
| answer |
| value : Test AHP |
| item |
| linkId : healthcareProfessionalSignature |
| text : Signature |
| answer |
| value : Dr. Hazel Smith |
| item |
| linkId : datehealthcareProfessionalCompletedForm |
| text : Date |
| answer |
| value : 2023-08-21 |
{
}
},
},
},
}
},
{
{
},
{
},
{
]
},
{
}
]
},
{
{
"text": "I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below.",
{
"text": "I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below",
]
},
{
"text": "I agree that my data and remainder sample may contribute to the National Genomic Research Library",
]
}
]
}
]
},
{
]
},
{
{
]
},
{
},
{
]
}
]
},
{
{
{
{
}
}
]
},
{
{
}
}
]
},
{
]
},
{
]
},
{
},
{
]
},
{
]
},
{
]
}
]
}
]
}
]
}
<questionnaire value="https://fhir.nhs.uk/Questionnaire/NHSDigital-Questionnaire-Genomics-Example" />
</identifier>
</subject>
</identifier>
</author>
</identifier>
</source>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
<text value="I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below." />
<text value="I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below" />
</answer>
</item>
<text value="I agree that my data and remainder sample may contribute to the National Genomic Research Library" />
</answer>
</item>
</item>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</valueCoding>
</answer>
</item>
</valueCoding>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</item>
</QuestionnaireResponse>
QuestionnaireResponse-RoD-PheobeSmithamCDForn-Example
Example of a filled Consultee Declaration Form.
| QuestionnaireResponse |
| id : QuestionnaireResponse-RoD-PheobeSmithamCDForn-Example |
| questionnaire : https://fhir.nhs.uk/Questionnaire/Questionnaire-RoD-ConsulteeDeclarationForm-Example |
| status : completed |
| basedOn |
| reference : ServiceRequest/ServiceRequest-WGSTestOrderForm-TrioTestingProband-Example |
| subject |
| reference : Patient/Patient-PheobeSmitham-Example |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9449307539 |
| display : A Patient |
| authored : 2023-09-15 |
| author |
| type : PractitionerRole |
| identifier |
| system : https://fhir.nhs.uk/Id/sds-role-profile-id |
| value : 999999999999 |
| source |
| type : RelatedPerson |
| reference : RelatedPerson/RelatedPerson-AliceSmithamProbandMother-Example |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9449307246 |
| item |
| linkId : patientDetails |
| text : Patient Details |
| item |
| linkId : givenName |
| text : First Name |
| answer |
| value : Phoebe |
| item |
| linkId : familyName |
| text : Last Name |
| answer |
| value : Smitham |
| item |
| linkId : nhs_Number |
| text : NHS number (or postcode if not not known) |
| answer |
| value : 9449307539 |
| item |
| linkId : birthDate |
| text : Date of Birth |
| answer |
| value : 2013-09-27 |
| item |
| linkId : confirmationOfDecision |
| text : Confirmation of decision |
| item |
| linkId : confirmation |
| text : I confirm that I have read and had the opportunity to discuss information about acting as a consultee for the person lacking capacity. My research choices are indicated below. |
| item |
| linkId : choiceConfirmation1 |
| text : I have been consulted about this person’s participation in the National Genomic Research Library |
| answer |
| value : True |
| item |
| linkId : choiceConfirmation2 |
| text : I am willing to accept the role of consultee for this person |
| answer |
| value : True |
| item |
| linkId : isRemoteConsentTrue |
| text : Consent obtained remotely, no consultee signature |
| answer |
| value : True |
| item |
| item |
| linkId : consulteeNamecombined |
| answer |
| value : Alice Smith |
| item |
| linkId : dateConsulteeCompletedForm |
| answer |
| value : 2023-09-15 |
| linkId : consulteeValidation |
| text : Consultee Validation |
| item |
| linkId : healthcareProfessionalValidation |
| text : Healthcare professional use only |
| item |
| linkId : healthcareProfessional |
| text : To be completed by the healthcare professional recording the consultee’s choices. |
| item |
| linkId : healthcareProfessionalName |
| text : Healthcare professional name |
| answer |
| value : Dr. Eugene Smith |
| item |
| linkId : healthcareProfessionalSignature |
| text : Signature |
| answer |
| value : EugeneSmith |
| item |
| linkId : datehealthcareProfessionalCompletedForm |
| text : Date |
| answer |
| value : 2023-09-15 |
{
"questionnaire": "https://fhir.nhs.uk/Questionnaire/Questionnaire-RoD-ConsulteeDeclarationForm-Example",
],
},
},
}
},
}
},
{
{
},
{
},
{
]
},
{
}
]
},
{
{
"text": "I confirm that I have read and had the opportunity to discuss information about acting as a consultee for the person lacking capacity. My research choices are indicated below.",
{
"text": "I have been consulted about this person’s participation in the National Genomic Research Library",
]
},
{
]
}
]
}
]
},
{
]
},
{
{
},
{
}
],
},
{
{
{
]
},
{
]
},
{
]
}
]
}
]
}
]
}
</basedOn>
<questionnaire value="https://fhir.nhs.uk/Questionnaire/Questionnaire-RoD-ConsulteeDeclarationForm-Example" />
</identifier>
</subject>
</identifier>
</author>
</identifier>
</source>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
<text value="I confirm that I have read and had the opportunity to discuss information about acting as a consultee for the person lacking capacity. My research choices are indicated below." />
<text value="I have been consulted about this person’s participation in the National Genomic Research Library" />
</answer>
</item>
</answer>
</item>
</item>
</item>
</answer>
</item>
</item>
</answer>
</item>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</item>
</QuestionnaireResponse>
QuestionnaireResponse-RoD-PheobeSmithamFather-Example
Example of a filled RoD Form.
| QuestionnaireResponse |
| id : QuestionnaireResponse-RoD-PheobeSmithamFather-Example |
| questionnaire : https://fhir.nhs.uk/Questionnaire/NHSDigital-Questionnaire-Genomics-Example |
| status : completed |
| basedOn |
| reference : ServiceRequest/ServiceRequest-WGSTestOrderFormUpdated-TrioTesting-Example |
| subject |
| reference : Patient/Patient-PheobeSmithamFather-Example |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9449307636 |
| authored : 2023-10-01 |
| author |
| identifier |
| system : https://fhir.nhs.uk/Id/sds-role-profile-id |
| value : 9999999996 |
| source |
| reference : Patient/Patient-PheobeSmithamFather-Example |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9449307636 |
| item |
| linkId : patientDetails |
| text : Patient Details |
| item |
| linkId : givenName |
| text : First Name |
| answer |
| value : James |
| item |
| linkId : familyName |
| text : Last Name |
| answer |
| value : Lawrence |
| item |
| linkId : nhs_Number |
| text : NHS number (or postcode if not not known) |
| answer |
| value : 9449307636 |
| item |
| linkId : birthDate |
| text : Date of Birth |
| answer |
| value : 1981-08-03 |
| item |
| linkId : declaration4 |
| text : Confirmation of Your Genomic Test and Research Choices |
| item |
| linkId : confirmation |
| text : I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below. |
| item |
| linkId : researchConfirmation1 |
| text : I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below |
| answer |
| value : True |
| item |
| linkId : researchConfirmation2 |
| text : I agree that my data and remainder sample may contribute to the National Genomic Research Library |
| answer |
| value : True |
| item |
| linkId : isRespondentAttorney |
| text : Are you completing this form on behalf of someone? |
| answer |
| value : False |
| item |
| linkId : patientValidation |
| text : Patient Validation |
| item |
| linkId : patientNamecombined |
| text : Patient Name |
| answer |
| value : James Lawrence |
| item |
| linkId : patientSignature |
| text : Signature |
| answer |
| value : JamesLawrence |
| item |
| linkId : datePatientCompletedForm |
| text : Date |
| answer |
| value : 2023-10-01 |
| item |
| linkId : declaration5 |
| text : Healthcare professional use only |
| item |
| linkId : healthcareProfessional |
| text : To be completed by the healthcare professional recording the patient’s choices. |
| item |
| linkId : patientCategory |
| text : Patient category |
| answer |
| value |
| system : https://fhir.nhs.uk/CodeSystem/patient-choice-category-genomics |
| code : adult-own-choice |
| display : Adult(made their own choice) |
| item |
| linkId : testType |
| text : Test type |
| answer |
| value |
| system : https://fhir.nhs.uk/CodeSystem/test-type-genomics |
| code : RID-WGS |
| display : Rare and Inherited Diseases - WGS |
| item |
| linkId : remoteConsent |
| text : Remote consent, recorded remotely by clinician, no patient signature |
| answer |
| value : True |
| item |
| linkId : responsibleClinician |
| text : Responsible clinician |
| answer |
| value : Dr. Eugene Smith |
| item |
| linkId : patientMRN |
| text : Hospital number |
| answer |
| value : NA |
| item |
| linkId : healthcareProfessionalName |
| text : Healthcare professional name |
| answer |
| value : Dr. Eugene Smith |
| item |
| linkId : healthcareProfessionalSignature |
| text : Signature |
| answer |
| value : Dr. Eugene Smith |
| item |
| linkId : datehealthcareProfessionalCompletedForm |
| text : Date |
| answer |
| value : 2023-10-01 |
{
],
}
},
},
}
},
{
{
},
{
},
{
]
},
{
}
]
},
{
{
"text": "I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below.",
{
"text": "I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below",
]
},
{
"text": "I agree that my data and remainder sample may contribute to the National Genomic Research Library",
]
}
]
}
]
},
{
]
},
{
{
]
},
{
},
{
]
}
]
},
{
{
{
{
}
}
]
},
{
{
}
}
]
},
{
]
},
{
]
},
{
},
{
]
},
{
]
},
{
]
}
]
}
]
}
]
}
</basedOn>
<questionnaire value="https://fhir.nhs.uk/Questionnaire/NHSDigital-Questionnaire-Genomics-Example" />
</identifier>
</subject>
</identifier>
</author>
</identifier>
</source>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
<text value="I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below." />
<text value="I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below" />
</answer>
</item>
<text value="I agree that my data and remainder sample may contribute to the National Genomic Research Library" />
</answer>
</item>
</item>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</valueCoding>
</answer>
</item>
</valueCoding>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</item>
</QuestionnaireResponse>
QuestionnaireResponse-RoD-PheobeSmithamMother-Example
Example of a filled RoD Form.
| QuestionnaireResponse |
| id : QuestionnaireResponse-RoD-PheobeSmithamMother-Example |
| questionnaire : https://fhir.nhs.uk/Questionnaire/NHSDigital-Questionnaire-Genomics-Example |
| status : completed |
| basedOn |
| reference : ServiceRequest/ServiceRequest-WGSTestOrderForm-TrioTestingProband-Example |
| subject |
| reference : Patient/Patient-PheobeSmithamMother-Example |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9449307246 |
| authored : 2023-09-15 |
| author |
| identifier |
| system : https://fhir.nhs.uk/Id/sds-role-profile-id |
| value : 9999999996 |
| source |
| reference : Patient/Patient-PheobeSmithamMother-Example |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9449307246 |
| item |
| linkId : patientDetails |
| text : Patient Details |
| item |
| linkId : givenName |
| text : First Name |
| answer |
| value : Alice |
| item |
| linkId : familyName |
| text : Last Name |
| answer |
| value : Smitham |
| item |
| linkId : nhs_Number |
| text : NHS number (or postcode if not not known) |
| answer |
| value : 9449307246 |
| item |
| linkId : birthDate |
| text : Date of Birth |
| answer |
| value : 1983-03-22 |
| item |
| linkId : declaration4 |
| text : Confirmation of Your Genomic Test and Research Choices |
| item |
| linkId : confirmation |
| text : I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below. |
| item |
| linkId : researchConfirmation1 |
| text : I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below |
| answer |
| value : True |
| item |
| linkId : researchConfirmation2 |
| text : I agree that my data and remainder sample may contribute to the National Genomic Research Library |
| answer |
| value : True |
| item |
| linkId : isRespondentAttorney |
| text : Are you completing this form on behalf of someone? |
| answer |
| value : False |
| item |
| linkId : patientValidation |
| text : Patient Validation |
| item |
| linkId : patientNamecombined |
| text : Patient Name |
| answer |
| value : Alice Smitham |
| item |
| linkId : patientSignature |
| text : Signature |
| answer |
| value : AliceSmitham |
| item |
| linkId : datePatientCompletedForm |
| text : Date |
| answer |
| value : 2023-09-15 |
| item |
| linkId : declaration5 |
| text : Healthcare professional use only |
| item |
| linkId : healthcareProfessional |
| text : To be completed by the healthcare professional recording the patient’s choices. |
| item |
| linkId : patientCategory |
| text : Patient category |
| answer |
| value |
| system : https://fhir.nhs.uk/CodeSystem/patient-choice-category-genomics |
| code : adult-own-choice |
| display : Adult(made their own choice) |
| item |
| linkId : testType |
| text : Test type |
| answer |
| value |
| system : https://fhir.nhs.uk/CodeSystem/test-type-genomics |
| code : RID-WGS |
| display : Rare and Inherited Diseases - WGS |
| item |
| linkId : remoteConsent |
| text : Remote consent, recorded remotely by clinician, no patient signature |
| answer |
| value : True |
| item |
| linkId : responsibleClinician |
| text : Responsible clinician |
| answer |
| value : Dr. Eugene Smith |
| item |
| linkId : patientMRN |
| text : Hospital number |
| answer |
| value : NA |
| item |
| linkId : healthcareProfessionalName |
| text : Healthcare professional name |
| answer |
| value : Dr. Eugene Smith |
| item |
| linkId : healthcareProfessionalSignature |
| text : Signature |
| answer |
| value : Dr. Eugene Smith |
| item |
| linkId : datehealthcareProfessionalCompletedForm |
| text : Date |
| answer |
| value : 2023-09-15 |
{
],
}
},
},
}
},
{
{
},
{
},
{
]
},
{
}
]
},
{
{
"text": "I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below.",
{
"text": "I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below",
]
},
{
"text": "I agree that my data and remainder sample may contribute to the National Genomic Research Library",
]
}
]
}
]
},
{
]
},
{
{
]
},
{
},
{
]
}
]
},
{
{
{
{
}
}
]
},
{
{
}
}
]
},
{
]
},
{
]
},
{
},
{
]
},
{
]
},
{
]
}
]
}
]
}
]
}
</basedOn>
<questionnaire value="https://fhir.nhs.uk/Questionnaire/NHSDigital-Questionnaire-Genomics-Example" />
</identifier>
</subject>
</identifier>
</author>
</identifier>
</source>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
<text value="I confirm that I have had the opportunity to discuss information about genomic testing, I agree to the genomic test, and my research choice is indicated below." />
<text value="I have discussed taking part in the National Genomic Research Library. If your answer to A is NO then please ignore B and sign directly below" />
</answer>
</item>
<text value="I agree that my data and remainder sample may contribute to the National Genomic Research Library" />
</answer>
</item>
</item>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</valueCoding>
</answer>
</item>
</valueCoding>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</item>
</QuestionnaireResponse>
QuestionnaireResponse-RoD-PheobeSmithamYPAForm-Example
Example of a filled Young Person Assent Form.
| QuestionnaireResponse |
| id : QuestionnaireResponse-RoD-PheobeSmithamYPAForm-Example |
| questionnaire : https://fhir.nhs.uk/Questionnaire/Questionnaire-RoD-YoungPersonAssentForm-Example |
| status : completed |
| basedOn |
| reference : ServiceRequest/ServiceRequest-WGSTestOrderForm-TrioTestingProband-Example |
| subject |
| identifier |
| system : https://fhir.nhs.uk/Id/nhs-number |
| value : 9449307539 |
| display : A Patient |
| authored : 2024-01-25 |
| author |
| type : PractitionerRole |
| identifier |
| system : https://fhir.nhs.uk/Id/sds-role-profile-id |
| value : 999999999999 |
| source |
| type : PractitionerRole |
| identifier |
| system : https://fhir.nhs.uk/Id/sds-role-profile-id |
| value : 999999999999 |
| item |
| linkId : patientDetails |
| text : Patient Details |
| item |
| linkId : givenName |
| text : First Name |
| answer |
| value : Phoebe |
| item |
| linkId : familyName |
| text : Last Name |
| answer |
| value : Smitham |
| item |
| linkId : nhs_Number |
| text : NHS number (or postcode if not not known) |
| answer |
| value : 9449307539 |
| item |
| linkId : birthDate |
| text : Date of Birth |
| answer |
| value : 2013-09-27 |
| item |
| linkId : declarationResponse |
| text : Please indicate your choices below by ticking the appropriate box: |
| item |
| linkId : consentQuestion1 |
| text : 1. Have you read information or has someone explained the research to you? |
| answer |
| value : True |
| item |
| linkId : consentQuestion2 |
| text : 2. Have you asked all the questions you want? |
| answer |
| value : True |
| item |
| linkId : consentQuestion3 |
| text : 3. Have you had your questions answered in a way you understand? |
| answer |
| value : True |
| item |
| linkId : consentQuestion4 |
| text : 4. Do you understand it’s OK to say you don’t want to take part – but that your parent(s), or guardian who look after you, will make the final choice? |
| answer |
| value : True |
| item |
| linkId : consentQuestion5 |
| text : 5. Are you happy to take part? |
| answer |
| value : True |
| item |
| linkId : isRemoteConsentTrue |
| text : Assent obtained remotely, no participant signature |
| answer |
| value : True |
{
"questionnaire": "https://fhir.nhs.uk/Questionnaire/Questionnaire-RoD-YoungPersonAssentForm-Example",
],
},
},
}
},
}
},
{
{
},
{
},
{
]
},
{
}
]
},
{
{
]
},
{
]
},
{
]
},
{
"text": "4. Do you understand it’s OK to say you don’t want to take part – but that your parent(s), or guardian who look after you, will make the final choice?",
]
},
{
]
}
]
},
{
]
}
]
}
</basedOn>
<questionnaire value="https://fhir.nhs.uk/Questionnaire/Questionnaire-RoD-YoungPersonAssentForm-Example" />
</identifier>
</subject>
</identifier>
</author>
</identifier>
</source>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
</item>
</answer>
</item>
</answer>
</item>
</answer>
</item>
<text value="4. Do you understand it’s OK to say you don’t want to take part – but that your parent(s), or guardian who look after you, will make the final choice?" />
</answer>
</item>
</answer>
</item>
</item>
</answer>
</item>
</QuestionnaireResponse>