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Short description
When a patient visits the clinic, data can be entered into an eCRF by, for example, a research nurse. Some information being collected, however, may become available only at a later point [De novo]. Hence, a crucial aspect for collecting the data is the underlying clinical workflow [FAIRopoly]. For example, while blood can perhaps be drawn during the initial visit, results from a genetic test may still need to be performed and will have to be entered at a later time. Thus, it is important to keep the practical side in mind and discuss this with your team while setting up the EDC and the eCRFs and to clearly define roles and responsibilities.
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It is important to properly design the general workflow for the patient’s healthcare journey, as this will provide the necessary insights on the logistics which need to be set up, but also defines, for example, when a patient will visit the hospital for baseline and follow-up events.
The How to section should:
be split into easy to follow steps;
Step 1
Step 2
etc.
help the reader to complete the step;
aspire to be readable for everyone, but, depending on the topic, may require specialised knowledge;
be a general, widely applicable approach;
if possible / applicable, add (links to) the solution necessary for onboarding in the Health-RI National Catalogue;
aim to be practical and simple, while keeping in mind: if I would come to this page looking for a solution to this problem, would this How-to actually help me solve this problem;
contain references to solutions such as those provided by FAIR Cookbook, RMDkit, Turing way and FAIR Sharing;
contain custom recipes/best-practices written by/together with experts from the field if necessary.
Expertise requirements for this step
This section could describe Describes the expertise required. Perhaps the Build Your Team step could then be an aggregation of all the “Expertise requirements for this step” steps that someone needs to fulfil his/her FAIRification goals. that may be necessary for this step. Should be based on the expertise described in the Metroline: Build the team step.
Practical examples from the community
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Add links to training resources relevant for this step. Since the training aspect is still under development, currently many steps have “Relevant training will be added in the future if available.”
Suggestions
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