How representative is your data and where does it come from?

Most of the data we use right now is self-reported and comes from patients and their caregivers. Primary outcome measures consist of existing self-reported patient outcome measures where available; otherwise we develop our own tools through a rigorous psychometric development process. We also encourage patients to report results of lab tests such as Hba1c in diabetes or CD4 count in HIV, and we have a symptom rating system, which asks patients to endorse symptoms as none/mild/moderate/severe. We are engaged in a number of pilots to integrate data from consumer wearable and medical devices, and are actively considering ways to integrate data objectively (e.g., importing data from electronic medical records). Please see these examples of publications describing our population compared to others: MS population, diabetes population

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