Skip to main content

Table 3 Requirements for the SelEe digital application

From: Identifying project topics and requirements in a citizen science project in rare diseases: a participative study

No

Requirement

Description

1

Daily and retrospective data acquisition

Simple, accessible entry of daily updated data (e.g., health status, experiences, symptoms, medication) as well as retrospective data (e.g., laboratory results, doctor's letters)

2

Documentation of one or multiple symptom(s)

Possibility of documenting ≥ 1 symptom at regular intervals, using a configurable template that defines the parameter to be recorded

3

Visual representation of data

Graphical display of data (e.g., symptoms), e.g., as a representation of the long-term trend

4

Printout of documentation

Possibility to print the recorded documentation as a report

5

Export of data

Export of the collected data in various digital formats, preferably in a format that is easy to use for medical professionals

6

Support in recognizing correlations and patterns (together with medical professionals)

Possibility to recognize patterns and correlations in the symptoms, e.g., that one parameter always occurs at a certain time interval after another parameter. This should be enabled by a compact visual representation of the parameters e.g., by plotting parameters together over time. Interpretations should be possible by the RD-affected person together with medical professionals