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Funded by Department of Veterans Affairs

Funding Years: 2009-2012

Because CRC-predictive genetic tests offer the potential to optimize CRC screening efforts, improving the communication and use of such tests by the millions of veterans who are screened for CRC each year could result in both improved cancer surveillance and more efficient (and potentially reduced) VA resource utilization. Our study will provide empirical data about practical risk communication methods that can be used in the future by VA clinicians to present genetic tests to veterans and about patient-level barriers which will inhibit acceptance of genetic tests that predict colorectal cancer risk within the VA patient population. By evaluating alternate methods of communicating genetic test results before such tests actually become available, we hope to identify optimal approaches that can be integrated into VA genomics initiatives from the very start.

Angela Fagerlin (PI)

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

Erica Sutton, PhD

Alumni

Dr. Erica Sutton was a CBSSM Postdoctoral Research Fellow, 2013-2015. She is an interdisciplinary social scientist engaged in social and behavioral science research that explores the health care experiences of individuals living with rare genetic conditions; the manner in which biotechnologies shape personal experience and social life; and the ethical implications of these technologies for individuals, public health, social policy, health care institutions, and communities.

Last Name: 
Sutton

Aisha Langford PhD, MPH

Alumni

Dr. Aisha Langford was a VA and CBSSM Postdoctoral Research Fellow, 2013-2015. She received her PhD from the department of Health Behavior and Health Education at the University of Michigan School of Public Health in Ann Arbor. From 2007 -2013, she directed the University of Michigan Comprehensive Cancer Center’s Community Outreach Program. Her research interests include chronic disease prevention and control, health communications, medical decision making, and clinical trial participation. Aisha is from the San Francisco Bay Area and earned her BA from the University of Virginia.

Last Name: 
Langford

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): Victor Strecher

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

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 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

Funded by NIH - Department of Health and Human Services

Funding Years: 2011-2017

Rheumatoid arthritis (RA) is a progressive and debilitating disease that often causes hand deformities that impair hand function. A common deformity is at the metacarpophalangeal joints (MCPJs) to cause ulnar drift and extension lag of the fingers. This study follows the world's largest cohort of over 160 RA patients prospectively for 3 years. The short-term (1-year) results have been analyzed for the cohort and have confirmed that the SMPA procedure is highly effective in correcting ulnar drift and improving hand function based on outcomes questionnaire assessments, whereas the medically-treated control group's hand function remains unchanged. The data for year 3 of this project are currently being analyzed. We are proposing to follow this unique cohort for an additional 4 years to assess the long-term outcomes of SMPA, to study the natural history of RA hand disease treated nonoperatively, and to determine predictors of long-term outcomes. This study seeks to define the optimal treatment of this RA hand condition and to provide evidence in guiding hand surgery treatment for this prevalent disease.

PI(s): Kevin Chung

Co-I(s): H. Myra Kim

Funded by Department of Defense - Department of the Army

Funding Years: 2012-2016

This study will test a tissue equivalent ex vivo produced oral mucosa equivalent (EVPOME), which is your own cells grown on top of a piece of AlloDerm (a commercially available freeze dried human cadaver tissue that is routinely used in present day surgical reconstructive procedures) to create a new piece of soft tissue for use only in your body. The tissue equivalent product will be tested against a non-experimental method of grafts, the gold standard a piece of palatal oral mucosa (POM) to see which works best. Patients will be randomly assigned to receive either the EVPOME or POM to cover the defect in their mouths. The objective of the study is to assess the safety and efficacy for the use of human EVPOME for soft tissue intraoral grafting procedures compared to the "gold standard" palatal oral mucosa (POM) graft.

PI(s): Stephen Feinberg, Robert Eber

Co-I(s): H. Myra Kim, William Giannobile

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