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Neuroscience Data in the Cloud Opportunities and Challenges: Proceedings of a Workshop (2020) / Chapter Skim
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10 Real-World Data
Pages 59-64

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From page 59...
... . • Validated diagnostic standards are needed for mental health conditions where objective standards are not currently estab lished to make RWD maximally useful (Di Martino)
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From page 60...
... , claims and billing activities, product and disease registries, patient-generated data ­ including in home-use settings, or data gathered from other sources that can inform on health status, such as mobile devices.1 RWD and real-world evidence (RWE) are playing an increasingly important role in clinical practice, clinical trials, and regulatory and reimbursement decision making, said Margaret Sutherland, program manager of science at the Chan Zuckerberg Initiative and former program director at NINDS.
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From page 61...
... Datasets may also have substantial differences in terms of how much data were recorded, said Peter Wahl, senior director of clinical research at Optum Analytics. In a study that tried to leverage EMR data in a health information exchange comprising multiple institutions, he and his col 3  For more information about mPower, see https://sagebionetworks.org/research-projects/ mpower-researcher-portal (accessed November 12, 2019)
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From page 62...
... Hill noted that providing physicians with digital tools may allow them to spend more time with patients and less time entering data into the EMR as they try to decipher the trajectory of the patient's illness. Ruth Marinshaw noted that in developing tools such as this it is important to partner with the users of those tools as well as the data providers to ensure that the interface and approach bring value to all of them.
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From page 63...
... She also noted that in many developmental and psychiatric conditions, there are no objective diagnostic standards and suggested that to make RWD useful, diagnostic standards and validation of those standards are needed.
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