2011 Annual Meeting
ASENT's 13th Annual Meeting
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Thursday, February 24, 2011
Whose Outcome Matters Most?: Update on Clinician and Patient Reported Outcome Measures
Whose Outcome Matters Most?: Update on Clinician and Patient Reported Outcome Measures Co-Chairs: Karen Johnston, MD, MSc, University of Virginia Cynthia Joyce, Spinal Muscular Atrophy Foundation Nancy Santilli, BSN, MSN, Endo Pharmaceuticals, Inc PROMIS, Neuro-QOL and The NIH Toolbox: Three new tools to advance and standardize patient-centered measures of health Over the past five years, several new tools have been developed to measure outcomes that matter in patents’ lives. These tools have all been sponsored by The National Institutes of Health, and should be useful in clinical research and quality improvement in clinical practice. They also have the potential to streamline discussions with regulatory authorities regarding patient-reported outcomes that are fit for purpose. They are available in English and Spanish, and can be used in children as well as adults. The first of these tools is the Patient Reported Outcomes Measurement Information System (PROMIS), which provides efficient (i.e., reliable-yet-brief) measures of generic health concepts (common symptoms and physical, mental and social health status). It allows one to choose from a large item bank of validated questions to construct an internet-based website that scales a patient's sense of fatigue, physical function, pain, emotional distress, and social participation. PROMIS is already in use today across a wide range of research and clinical settings (www.nihpromis.org). The second, Neuro-QOL (www.neuroqol.org) is also available for use now and can best be considered a neurology-specific version of the more general PROMIS. Neuro-QOL has the advantage of being directly linked to PROMIS across most of its item banks, yet it provides more specificity with regard to common neurologic conditions. PROMIS and Neuro-QOL may be particularly useful in multicenter neurological treatment studies because they are customizable, quick and easy to use. They can be utilized for remote patient assessment, and have potential for consideration in discussion with regulatory authorities as a standardized basis for approving experimental therapeutics. The third new tool is the NIH Toolbox (www.nihtoolbox.org). Scheduled to be available for public use in 2012, it extends standardized patient-centered assessment beyond self-report (PROMIS and Neuro-QOL are exclusively self-report systems). Toolbox measures of health range from motor function, to sensory function (vision, audition, taste, smell, somatosensation, vestibular balance), to cognitive function and emotional health. The NIH Toolbox provides this wide array of brief, standardized tools for measuring neurologic function and will include normative values for each assessment. Neurologists and neurological investigators should consider how these tools may improve assessment of clinically important patient-reported and patient-centered outcomes. Investigators should consider how to use these standardized measures to enhance the quality and scope of data collected in their studies.
Mitchell Brin, MD, Allergan, Inc. Martha Morrell, MD, NeuroPace, Inc.
Dinner Session - How to Engage the Public in Neuroscience
CO: Mitchel Brin, MD, Allergan,; Kathleen Clarence-Smith, MD, PhD, KM Pharmaceuticals Consulting, LLC
Friday, February 25, 2011
Co-chairs: Jacqueline French, MD, NYU Comprehensive Epilepsy Center; William Theodore MD, NIH
Saturday, February 26, 2011
Co-Chair: Thomas Chase, MD, Chase Parmaceuticals Jill Rasmussen, MBCHB, Psi-Napse Ira Shoulson, MD, University of Rochester