Our proposed National Person-Centered Assessment Resource (PCAR) includes many components, goals, and tasks. The effective integration of PCAR will require active and attentive management of resources and communication. The Administrative (Admin) Core will provide overall administrative and organizational oversight of the PCAR to avoid redundancy and maximize synergy, resource efficiency, and personnel productivity. We propose four specific aims: 1) To plan and implement a realistic and sustainable PCAR business plan;2) To oversee intellectual property (IP) negotiation, documentation and protection;and manage communication and modifications of IP;3) To provide support for internal communications, evaluation and self- assessment;and 4) To provide overall administrative and management leadership of PCAR in conjunction with the Research Resource. To accomplish these aims, and supported by Northwestern University institutional commitments, we will incorporate cost recovery strategies and related funding through relevant academic, public and private partnerships (Aim 1). We will also establish instrument-specific policies for management of the intellectual property (IP) and brand integrity of the four measurement systems: The Patient Reported Outcomes Measurement Information System(R);The NIH Toolbox for Assessment of Neurological and Behavioral Function;The Quality of Life Outcomes in Neurological Disorders;and The Adult Sickle Cell Quality of Life Measurement Information System. This includes negotiating IP and distribution rights, developing criteria and procedures for modifying content, documenting and communicating IP status, and supporting access to instruments and data consistent with NIH policies (Aim 2). We will also employ timely reporting of PCAR instrument utilization, the status of the Research Resource infrastructure, publications from studies using PCAR resources, and uptake of PCAR measures in electronic health records. We will compile, organize, monitor and update information regarding current and anticipated needs of investigators (Aim 3). Finally, we will initiate and support regularly scheduled interactions among all PCAR components (Research Resource; Admin, Statistical, and Outreach Cores), interact with the NIH, and promote the goals and priorities of the PCAR;provide meeting and other logistical support for the twice-yearly PCAR Steering Committee (PCAR-SC) in-person and teleconference meetings and any PCAR internal meetings;and provide logistical support for the PCAR-SC, Scientific Consulting Panel and any other subcommittees established by the PCAR-SC (Aim 4). Our proposed Admin Core will be staffed by personnel with extensive experience in cooperative group network and research contract scientific and administrative leadership. Admin Core personnel have collectively accrued more than 75 years'experience supporting the four measurement systems and their research networks, including strategic business planning and sustainability initiatives;IP management;self-assessment and evaluation;and overall operational, meeting, and logistical planning and support.

National Institute of Health (NIH)
National Cancer Institute (NCI)
Resource-Related Research Multi-Component Projects and Centers Cooperative Agreements (U2C)
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Special Emphasis Panel (ZCA1-GRB-I (J2))
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Northwestern University at Chicago
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Hoffman, Geoffrey J; Hays, Ron D; Shapiro, Martin F et al. (2016) Claims-based Identification Methods and the Cost of Fall-related Injuries Among US Older Adults. Med Care 54:664-71
Miller, Deborah M; Bethoux, Francois; Victorson, David et al. (2016) Validating Neuro-QoL short forms and targeted scales with people who have multiple sclerosis. Mult Scler 22:830-41
Cella, David; Lai, Jin-Shei; Jensen, Sally E et al. (2016) PROMIS Fatigue Item Bank had Clinical Validity across Diverse Chronic Conditions. J Clin Epidemiol 73:128-34
Hays, Ron D; Revicki, Dennis A; Feeny, David et al. (2016) Using Linear Equating to Map PROMIS(®) Global Health Items and the PROMIS-29 V2.0 Profile Measure to the Health Utilities Index Mark 3. Pharmacoeconomics 34:1015-22
Hoffman, Geoffrey J; Hays, Ron D; Wallace, Steven P et al. (2016) Receipt of Caregiving and Fall Risk in US Community-Dwelling Older Adults. Med Care :
Haverman, Lotte; Grootenhuis, Martha A; Raat, Hein et al. (2016) Dutch-Flemish translation of nine pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)®. Qual Life Res 25:761-5
Hahn, Elizabeth A; Beaumont, Jennifer L; Pilkonis, Paul A et al. (2016) The PROMIS satisfaction with social participation measures demonstrated responsiveness in diverse clinical populations. J Clin Epidemiol 73:135-41
Schalet, Benjamin D; Pilkonis, Paul A; Yu, Lan et al. (2016) Clinical validity of PROMIS Depression, Anxiety, and Anger across diverse clinical samples. J Clin Epidemiol 73:119-27
Kozlowski, Allan J; Cella, David; Nitsch, Kristian P et al. (2016) Evaluating Individual Change With the Quality of Life in Neurological Disorders (Neuro-QoL) Short Forms. Arch Phys Med Rehabil 97:650-4.e8
Tulsky, David S; Kisala, Pamela A; Victorson, David et al. (2016) TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury. J Head Trauma Rehabil 31:40-51

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