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Historically, clinical research has suffered from the lack of comprehensive tools to measure patient centered outcomes that are brief, highly accurate, and valid for comparisons across the age spectrum and in both healthy populations and disease groups. To address these gaps, the NIH supported the development of four groundbreaking measurement systems: the Patient Reported Outcomes Measurement Information System® (PROMIS®), the NIH Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox), the Quality of Life Outcomes in Neurological Disorders (Neuro-QOL), and the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). These systems measure a complement of important health outcomes either from the individual participant's or patient’s perspective (e.g., symptoms, function, health-related quality of life), or provide performance measures of function (e.g., sensory, motor, and cognitive health). In August 2014, the NCI awarded a trans-NIH Cooperative Agreement to integrate and support these four systems under one research resource. This presentation will describe the systems and their capabilities, and outline plans for their implementation in the research and clinical communities. |
BIO:
Ashley Wilder Smith, Ph.D., M.P.H. is a Behavioral Scientist and Program Director in the Outcomes Research Branch of the Applied Research Program. Her program of research focuses on developing, advancing and promoting investigations related to improving current understanding of patient reported outcomes and quality care for cancer patients, survivors and families.
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Speaker: Ashley Wilder Smith, Ph.D., M.P.H.
Date: Wednesday, October 1, 2014
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