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.
Questionnaire-RoD-YoungPersonAssentForm-Example
The Young Person Assent Form represented as a FHIR questionnaire. If YPA forms are sent as structured resources, they should be based upon the example below.
| Questionnaire |
| id : Questionnaire-RoD-YoungPersonAssentForm-Example |
| url : https://fhir.nhs.uk/Questionnaire/Questionnaire-RoD-YoungPersonAssentForm-Example |
| version : 0.1.0 |
| name : QuestionnaireRoDYoungPersonAssentFormExample |
| title : National Genomic Research Library Young Person Assent Form (ages 6 – 15) |
| status : draft |
| subjectType : Patient |
| date : 2024-01-18T09:00:00Z |
| publisher : NHS England |
| contact |
| name : NHS England |
| telecom |
| system : email |
| value : interoperabilityteam@nhs.net |
| use : work |
| rank : 1 |
| description : This questionnaire is to be used to document the patient consent for young person(ages 6 – 15) before undergoing Genomic testing and their choice of participation in the National Genomic Research Library programme |
| purpose : Young Person Assent Form (ages 6 – 15) Regarding Genomic Testing |
| item |
| type : display |
| linkId : declaration |
| text : Feel free to ask any questions before answering the questions below. |
| item |
| linkId : patientDetails |
| text : Patient Details |
| type : group |
| item |
| linkId : givenName |
| text : First Name |
| type : string |
| required : True |
| item |
| linkId : familyName |
| text : Last Name |
| type : string |
| required : True |
| item |
| linkId : nhs_Number |
| text : NHS number (or postcode if not not known) |
| type : string |
| required : True |
| item |
| linkId : birthDate |
| text : Date of Birth |
| type : date |
| required : True |
| item |
| item |
| type : boolean |
| linkId : consentQuestion1 |
| text : 1. Have you read information or has someone explained the research to you? |
| required : True |
| item |
| type : boolean |
| linkId : consentQuestion2 |
| text : 2. Have you asked all the questions you want? |
| required : True |
| item |
| type : boolean |
| linkId : consentQuestion3 |
| text : 3. Have you had your questions answered in a way you understand? |
| required : True |
| item |
| type : boolean |
| 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? |
| required : True |
| item |
| type : boolean |
| linkId : consentQuestion5 |
| text : 5. Are you happy to take part? |
| required : True |
| type : group |
| linkId : declarationResponse |
| text : Please indicate your choices below by ticking the appropriate box: |
| readOnly : True |
| item |
| item |
| type : display |
| linkId : NonWillingToConsent1 |
| text : • Don’t sign your name on this form |
| item |
| type : display |
| linkId : NonWillingToConsent2 |
| text : • Tell your parents and healthcare team how you feel, so they know |
| type : group |
| linkId : guidanceNonWillingToConsent |
| text : If ANY of your answers are ‘NO’, or you don’t want to take part: |
| item |
| item |
| type : display |
| linkId : WillingToConsent |
| text : • Please write your name, signature, and today’s date here: |
| type : group |
| linkId : guidanceWillingToConsent |
| text : If ALL of your answers are ‘YES’: |
| item |
| type : boolean |
| linkId : isRemoteConsentTrue |
| text : Assent obtained remotely, no participant signature |
| required : True |
| item |
| item |
| type : string |
| linkId : patientNamecombined |
| text : Patient Name |
| required : True |
| item |
| type : string |
| linkId : patientSignature |
| text : Signature |
| required : True |
| item |
| type : dateTime |
| linkId : datePatientCompletedForm |
| text : Date |
| required : True |
| type : group |
| linkId : patientValidation |
| text : Patient Validation |
| enableWhen |
| question : consentQuestion1 |
| operator : = |
| answer : True |
| enableWhen |
| question : consentQuestion2 |
| operator : = |
| answer : True |
| enableWhen |
| question : consentQuestion3 |
| operator : = |
| answer : True |
| enableWhen |
| question : consentQuestion4 |
| operator : = |
| answer : True |
| enableWhen |
| question : consentQuestion5 |
| operator : = |
| answer : True |
| enableWhen |
| question : isRemoteConsentTrue |
| operator : = |
| answer : False |
| enableBehavior : all |
{
"Patient"
],
{
]
}
],
"description": "This questionnaire is to be used to document the patient consent for young person(ages 6 – 15) before undergoing Genomic testing and their choice of participation in the National Genomic Research Library programme",
{
},
{
{
},
{
},
{
},
{
}
]
},
{
{
},
{
},
{
},
{
"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?",
},
{
}
],
},
{
{
},
{
}
],
},
{
{
}
],
},
{
},
{
{
},
{
},
{
}
],
{
},
{
},
{
},
{
},
{
},
{
}
],
}
]
}
</telecom>
</contact>
<description value="This questionnaire is to be used to document the patient consent for young person(ages 6 – 15) before undergoing Genomic testing and their choice of participation in the National Genomic Research Library programme" />
</item>
</item>
</item>
</item>
</item>
</item>
</item>
</item>
</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?" />
</item>
</item>
</item>
</item>
</item>
</item>
</item>
</item>
</item>
</enableWhen>
</enableWhen>
</enableWhen>
</enableWhen>
</enableWhen>
</enableWhen>
</item>
</item>
</item>
</item>
</Questionnaire>