Rare Diseases in Citizen Science - Preliminary Experiences in Developing a Personal Health App.

SelEe is a German citizen science project aiming to develop a smartphone app for a patient-managed record. The goal is to study rare diseases with the support of interested citizens and people affected by rare diseases. We established a core research team, including professional researchers (leading the project) and citizens.

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

Background: 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.