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Funded by the National Institutes of Health

Funding Years: 2011-2016

The CCC creates the NETT Network infrastructure to promote and conduct clinical trials that will provide new and effective treatments for neurologic emergencies by: Developing the Network architecture and organizational structure including bylaws and procedures; Establishing processes to design and implement trials that will encourage the clinical translation of findings into routine practice; Managing clinical trials (establish rigorous criteria for monitoring recruitment, adhere to established deadlines and develop criteria for monitoring Hub effectiveness and compliance); Providing clinical trial operational resources (electronic data entry, automated screening and notification, access to telemedicine resources, advanced outcomes assessment, and human subjects protection tools); Creating an information technology infrastructure that will enhance the efficiency, speed, and accuracy of site, trial, and data management in the Network; Establishing trial development structures (recruit future trials and investigators, define internal review and publication procedures).

PI(s): Bill Barsan

Co-I(s): Lewis Morgenstern, Art Pancioli, Robert Silbergleit

Funded by Robert Wood Johnson Foundation

Funding Years: 2015-2016

The researchers will examine the extent to which consumers who are in high-deductible health plans (HDHPs) engage in behaviors that help them optimize value. Employing a nationally representative survey, the researchers will explore: (1) how often and in what situations consumers engage in key value-promoting behaviors such as budgeting for health services, choosing settings of care based on price and/or quality, engaging in shared decision-making with providers that considers cost, and negotiating prices for services; (2) which consumers are most likely to engage in these behaviors; (3) which behaviors consumers find most beneficial in maximizing the value of their out-of-pocket (OOP) expenditures; (4) what are the facilitators of and barriers to consumers’ engagement in value-promoting behaviors; and (5) what are consumers’ attitudes and intentions towards engaging in value-promoting consumer behaviors in specific clinical situations. The goal of this project is to inform policymakers, payers, health systems, providers and consumers about the frequency and perceived effects of value-promoting consumer behaviors in HDHPs.

PI(s): Jeffrey Kullgren

Co-I(s): Angela Fagerlin, Helen Levy, A. Mark Fendrick

Funded by NIH - Department of Health and Human Services

Funding Years: 2011-2016

Disorders of Sex Development are defined as congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. One of the most defining moments of our lives is when, in the womb, we embark on a male or female path. Disruption of typical male or female development, whether mild or severe, results in DSD, which occur quite frequently, in about 1% of the human population. DSD are extremely stressful for parents and, as they grow older, the affected person and are often accompanied by additional medical and psychological problems; yet little is known about the causes of DSD and what healthcare teams should do in the short and long term. This project proposes to design a way to learn about the genetic causes and the psychological consequences of DSD, and to use these data to provide healthcare teams with procedures to evaluate and improve care for these patients and their families.

PI(s): David Sandberg

Co-I(s):  Eric Vilain, Edward Goldman

Target specific oral anticoagulants (TSOAC)s including dabigatran, rivaroxaban, and apixaban represent novel alternatives to vitamin K antagonists. These medications provide an attractive choice for both physicians and patients alike due to their predictable pharmacokinetics, fixed-dose regimens, lack of routine monitoring, and fewer drug-drug interactions as compared to warfarin. However, these anticoagulants are not without their own unique features and risks, including required dose adjustments for patient specific factors such as renal function, weight, and age, and lack of a routine monitoring parameter to follow patient adherence with therapy. In addition, the cost of TSOACs and the growing number of indications they are currently approved for makes ensuring affordability as well as the correct dosage based on indication for therapy extremely important.

PI(s): Geoffrey Barnes

Co-I(s): Emily Ashjian

Funded by Department of Health and Human Services - National Institutes of Health Subcontracts

Funding Years: 2014 - 2018

This five-year prevention trial proposes to test an anti-amyloid drug in cognitively normal older volunteers who are at increased risk of developing late-onset Alzheimer’s because they inherited two copies of the APOE4 allele, the best known genetic risk for late-onset disease. The treatment, which has not yet been selected, will be tested in this randomized, controlled clinical trial at multiple sites. Participants will be assessed through cognitive tests, brain imaging and cerebrospinal fluid measurements to evaluate whether the drug impacts amyloid, other biological measurements and the memory and thinking problems related to the disease. The study will test the role of amyloid in the development of Alzheimer’s and will, through imaging and biomarker techniques, help identify faster ways to evaluate other promising prevention therapies in the future. It is anticipated that the study will also be supported with private funding.

PI(s): J. Scott Roberts

Funded by Robert Wood Johnson Foundation

Funding Years: 2013-2014

Patients and the public are being inundated with a flood of health data and being asked to take a greater role in applying this data to make medical decisions regarding their own health. While general guidelines exist for "best practices" in medical risk communication, this work has not always considered the specific communication goals of the risk message or the specific information or practical needs of the patient. The  Communicating Health and Risk Messages (CHARM) project will address the gap in our current knowledge by informing the design of health risk data visualizations  across the full spectrum of risk communication goals.

PI(s): Vic Strecher, PhD, MPH

Co-I(s): Lawrence An, Angela Fagerlin, Kenneth Resnicow, Brian Zikmund-Fisher

Funded by the National Institutes of Health

Funding years: 2009-2014

The Specific Aims of this study are (1) to examine patterns and correlates of quality of adjuvant chemotherapy in a population-based sample of women, (2) to examine patterns and correlates of quality of breast cancer hormonal therapy in a population-based sample of women with breast cancer, and (3) to estimate the frequency of classification error in key pathologic variables-ER and HER2 status-in a population-based sample of women with breast cancer and explore the impact of such error on receipt of optimal adjuvant systemic therapy. We propose to investigate these factors through patient interview, medical record review, and repeat assessment of pathologic variables on primary tumor specimens. The results of this study will be used to advance methods in oncology outcomes research and to inform policy and practice interventions to improve the quality of breast cancer care in the United States. For more information, visit NIH Reporter.

PI(s): Jennifer Griggs, Steven Katz

Co-I: Sarah Hawley

Funded by the Department of Health and Human Services / Rand Corporation

Funding years: 2007-2013

Dr. Kenneth Langa will continue to collaborate with Michael Hurd, PhD and other RAND researchers on a research project designed to determine the full societal costs of dementia in the United States. Dr. Langa and Dr. Hurd collaborated on the original R01 project from 2007 through 2013, and will now continue collaborating on this no-cost extension for the project. The proposed studies during this no-cost extension will build on our prior collaborative work on dementia costs by: 1) Identifying costs of dementia at the household level over time, and its effect on the economic position of affected households); and 2) Extending our model of the probability of dementia by the inclusion of genetic information.

PI: Kenneth Langa

Funded by Patient Centered Outcomes Research Institute.

Funding Years: 2012-2014.

While substantial progress has occurred recognizing community expertise in research, and involving communities in decisions about research aims and methods, community influence on research priorities remains limited. Building on experience with developing, testing and using the award-winning CHAT (Choosing Healthplans All Together) tool, and propelled by a current project that is developing and evaluating a tool to engage minority and underserved communities in setting priorities for clinical and translational research, we plan to develop and test a method to engage the public and patients in deliberations about patient-centered outcomes research (PCOR) priorities. The proposed study expands public input on research priorities beyond the limited settings of advisory boards and disease advocates in which much public engagement currently functions and contribute to a more just and equitable system of PCOR. Importantly, by evaluating the tool this project will also add to the body of knowledge about methods, processes and outcomes of community engagement. For more information, visit PCORI.

PI(s): Susan Goold

Co-I(s): Lawrence An, Ray De Vries, Jennifer Griggs,  Myra Kim

 

Funded by the National Institutes of Health.

Funding Years: 2011-2016. 

While substantial progress has occurred recognizing community expertise in Research, and involving Communities in Decisions about Research aims and methods, community influence on Research Funding priorities remains limited. Building on experience with developing, Testing and using the successful CHAT (Choosing Healthplans All Together) tool, we plan to modify an existing priority setting simulation exercise to develop a tool to engage minority and underserved Communities in setting priorities for clinical and translational Research, evaluate it from the perspective of those who participate, and examine the extent to which it actually influences Research priorities. This tool could be valuable to Research Funding organizations, community-academic partnerships, community organizations asked to participate in Research, and others aiming to engage Communities in Research. For more information, visit NIH Reporter

PI(s): Susan Goold

Co-I(s): Kathryn Moseley 

 

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