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Patient experience data

Data that is collected by family or friends and is intended to provide information about patients’ experiences with a disease or condition. Patient experience data can be interpreted as information that captures patients’ experiences, perspectives, needs, and priorities related to (but not limited to): 1) the symptoms of their condition and its natural history; 2) the impact of the conditions on their functioning and quality of life; 3) their experience with treatments; 4) input on which outcomes are important to them; 5) patient preferences for outcomes and treatments; and 6) the relative importance of any issue as defined by patients.

FDA-Collecting patient experience data: how you can best help FDA?


More resources

EMA-Patient experience data in EU medicines development and regulatory decision-making Outcome of the workshop on 21 st September 2022


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