Skip to main content

Notice

We are in the process of rolling out a soft launch of the RDA website, which includes a new member platform. Existing RDA members PLEASE REACTIVATE YOUR ACCOUNT using this link: https://rda-login.wicketcloud.com/users/confirmation. Visitors may encounter functionality issues with group pages, navigation, missing content, broken links, etc. As you explore the new site, please provide your feedback using the UserSnap tool on the bottom right corner of each page. Thank you for your understanding and support as we work through all issues as quickly as possible. Stay updated about upcoming features and functionalities: https://www.rd-alliance.org/rda-web-platform-upcoming-features-and-functionalities/

#129847

Team:
In considering additional questionnaires/CRFs we need to be use case driven.
One use case we might want to support is the early warning system. In addition to clinic and hospital surveillance, this requires various forms of surveillance in the field. See the green below:
Of course once we cross domains like from hospital/clinical to various forms of field surveillance we will also encounter data dictionaries, codebooks and metadata that conform to different standards. Mixing metadata standards is a problem that is playing out currently in the Wellcome Trust LMIC Questionnaire Initiative since HICs (in the UK) “naturally” think in terms of HL7 FHIR and data model for hosting EHR data called OMOP.
The callout at Disease Management speaks to this issue.
I will try to forward to you parts of the conversation that is ongoing with the Wellcome Trust LMIC Questionnaire.
Jay
On May 13, 2020, at 4:54 AM, ***@***.***-wien.at via RDA-COVID19-Epidemiology wrote:
Dear Claire, all
in case my other meetings keep me out of the EPI call:
If interested, please have a look at the “Covid19 CRFs ContentOverview”
https://docs.google.com/spreadsheets/d/1YoCNpzhewRKvaE8AeWMpQkzmTisNyIT8
Especially the ModulesSections sheet.
Things to discuss:
Modules: The WHO CRF modules are a good starting point for the overall structure
some elements are not covered in WHO, like behavior, financial, etc.
are there other WHO forms that cover these? Can we copy the module titles and content from there? This would align to WHO, preferred in a perfect world.
Module Priorities: which of these modules do we REALLY need, and how fast?
it may be OK to confirm that we need all of them
which modules must be harmonised first? Medical? Demographic? Lab? Co-morbidities? Behaviour? …
Missing CRFs
do we see other CRFs that should be added?
Next steps:
Any comments??
Agree on “module” titles for the items missing in the WHO CRF
work them into the table
for high priority modules:
look at sections and content, and generate a more detailed overview of the content
also add in the nomenclatures, taxonomies, codes, …. semantic information used for the information items.
add new CRFs, that the EPI group believes should go in.
We need a crisp set of use cases that this effort intends to serve.
This might be done next week.
Looking forward,
Stefan