Table 3 Selection of open codes referring to performance expectancy, based on frequency

Performance expectancy of tool for healthcare professionals and patients/ families (frequency 368/1357 codes)

Raise suspicion - Increase GPs and specialists’ awareness/knowledge on rare diseases: “Myth busting”; Comprehensive, easy to use and adaptable tool for networking and multidisciplinary collaborations; Information/discussions about ultra-rare diseases complex cases involving multiple autoimmune; The real added value would be Europeans coming in otherwise too small of a number for expertise to grow and patients to network; Original content/interaction you cannot find on websites; HCP learning from patient experience because the disease doesn’t manifest in the same way for all patients; Large scale dissemination of specialized information; Needing to learn about new therapies/ clinical trials and how I can participate; Opportunity for patients to come out: Is my diagnosis rare?; Needing access to specialist repository by disease group and disease; Opportunity for patients to come out- work in progress