Due to their low prevalence (< 5 in 10,000), rare diseases are an important area of research, with the active participation of those affected being a key factor. In the Citizen Science project “SelEe” (Researching rare diseases in a citizen science approach), citizens collaborate with researchers using a digital application, developed as part of the project together with those affected, to answer research questions on rare diseases. The aim of this study was to define the rare diseases to be considered, the project topics and the initial requirements for the implementation in a digital application.
Thursday, September 15, 2022
Identifying project topics and requirements in a citizen science project in rare diseases: a participative study
Michaela Neff, Holger Storf, Jessica Vasseur, Jörg Scheidt, Thomas Zerr, Andreas Khouri & Jannik Schaaf. Orphanet J Rare Dis 17, 357 (2022). doi:10.1186/s13023-022-02514-3
