Rare Disease Patient Registries
- February 11 (All day)
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February 11 (All day)
Patient registries are on-going, exhaustive systems of data collection of patients with the same disease(s) from a geographically defined population over an extended period of time. By collecting patient data, patient registries constitute key instruments in supporting health service planning, increasing knowledge on rare diseases (RD) and support research by pooling data. Patient registries are only one type of database collecting information on RD patients used to ask or answer research questions
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