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...Et al orphanet journal of rare diseases neff https doi org s research open access identifying project topics and requirements in a citizen science participative study michaela holger storf jessica vasseur jorg scheidt thomas zerr andreas khouri jannik schaaf abstract background due to their low prevalence are an important area with the active participation those affected being key factor selee researching approach citizens collaborate researchers using digital application developed as part together answer questions on aim this was define be considered initial for implementa tion methods address our we took several steps engage especially by included following pre post survey questionnaire two workshops focus group discussion analysis workshop user stories results suggested different many disease groups main patient guided documentation data collection votes b exchange experience networking were identified priorities ranked resulted ten six imple mented conclusion qualitative can used c...