Closed hcadavid closed 5 months ago
@hyunho-mo, thanks for pointing out the need for these variables. After looking at other studies where these kinds of details (related to the research study itself) need to be standardized, I found that the following FHIR resources would be suitable for representing 'date of inclusion' and 'date of last response' ('date of death' was already included in the existing Patient resource):
ResearchSubject
{
"resourceType": "ResearchSubject",
"id": "example",
"text": {
"status": "generated",
"div": "<div xmlns=\"http://www.w3.org/1999/xhtml\"></div>"
},
"identifier": {
"type": {
"text": "Subject id"
},
"value": "nl-core-patient-1234"
},
"period": {
"start": "2010-06-10",
"end": "2022-06-10"
},
"status": "candidate",
"study": {
"reference": "urn:uuid:7d01edee-33e5-5115-a5db-5829e35d5999"
},
"individual": {
"reference": "urn:uuid:7d01edee-33e5-5115-a5db-5829e35d5e06"
}
}
ResearchStudy
{
"resourceType": "ResearchStudy",
"identifier": [
{
"type": {
"text": "Study name"
},
"value": "LifelinesNL"
}
],
"title": "Lifelines",
"status": "completed"
}
I think it will be good to have these details not only for performing these 'time-to-event' calculations but also to be able to tell from which study each data point came (on an eventual 'federated data analysis'
With this, 'date of inclusion' and 'date of last response' would be the 'start' and 'end' properties of 'period'. The date of inclusion is already available in the global_summary. @hyunho-mo, what do you think? The 'date of last response' would then be the date of the last non-skipped assessment (in the raw data, the date registered on the last CSV file where the the participant appeared). In the preprocessed data this is evidenced by the empty dates, like in the following where the last response would be 2002-5.
"date": {"1a":"1992-5","1b":"1995-5","1c":"","2a":"2001-5","2b":"2002-5","3a":"","3b":""},
@squareb would this assumption be accurate?
@hyunho-mo, thanks for pointing out the need for these variables. After looking at other studies where these kinds of details (related to the research study itself) need to be standardized, I found that the following FHIR resources would be suitable for representing 'date of inclusion' and 'date of last response' ('date of death' was already included in the existing Patient resource):
ResearchSubject
{ "resourceType": "ResearchSubject", "id": "example", "text": { "status": "generated", "div": "<div xmlns=\"http://www.w3.org/1999/xhtml\"></div>" }, "identifier": { "type": { "text": "Subject id" }, "value": "nl-core-patient-1234" }, "period": { "start": "2010-06-10", "end": "2022-06-10" }, "status": "candidate", "study": { "reference": "urn:uuid:7d01edee-33e5-5115-a5db-5829e35d5999" }, "individual": { "reference": "urn:uuid:7d01edee-33e5-5115-a5db-5829e35d5e06" } }
ResearchStudy
{ "resourceType": "ResearchStudy", "identifier": [ { "type": { "text": "Study name" }, "value": "LifelinesNL" } ], "title": "Lifelines", "status": "completed" }
I think it will be good to have these details not only for performing these 'time-to-event' calculations but also to be able to tell from which study each data point came (on an eventual 'federated data analysis'
With this, 'date of inclusion' and 'date of last response' would be the 'start' and 'end' properties of 'period'. The date of inclusion is already available in the global_summary. @hyunho-mo, what do you think? The 'date of last response' would then be the date of the last non-skipped assessment (in the raw data, the date registered on the last CSV file where the the participant appeared). In the preprocessed data this is evidenced by the empty dates, like in the following where the last response would be 2002-5.
"date": {"1a":"1992-5","1b":"1995-5","1c":"","2a":"2001-5","2b":"2002-5","3a":"","3b":""},
@squareb would this assumption be accurate?
Hi Hector, thank you very much for taking care of this. The additional variable called 'period' is exactly what I asked for and the 'end' property corresponds to the 'date of last response' I intended.
@hcadavid That would indeed be an accurate representation
@hyunho-mo I'm moving the issue you posted on (https://github.com/MyDigiTwinNL/LifelinesDataAccessDocumentation/issues/1#issue-1924309576) to this repository, where we will actually handle it.