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PCORnet Best Practice Sharing Session: The Brain Health Registry Caregiver and Study Partner Portal: An Alzheimer’s PPRN Tool to Facilitate Patient-centered Clinical Research

March 7, 2017 @ 12:00 pm EDT - 1:00 pm EDT

The Brain Health Registry Caregiver and Study Partner Portal is a novel, innovative online tool for recruitment, engagement, assessment, and education of caregivers.   We will describe the data collected so far using the Caregiver Portal and its potential impact on dementia research, including ways that it can facilitate Alzheimer’s disease clinical trials and improve screening of older adults for cognitive decline in various healthcare settings.  We will also discuss the ways that the Caregiver Portal can be adapted to engage caregivers and study partners in many different patient populations, including within and outside the PCORnet community.


  • Dr. Michael W. Weiner, MD. has been doing research for over 40 years and is the Principal Investigator of the Alzheimer’s Disease Neuroimaging Initiative, a 10-year national longitudinal study of over 1500 subjects that is aimed at validating biomarkers for Alzheimer’s disease. He has also launched the BrainHealthRegistry.org, which is an Internet based registry with the overall goal of accelerating development of effective treatments for brain diseases. This website registry recruits, screens, and longitudinal monitors brain function on thousands of subjects all over the USA. His overall research goals are to participate in the development of effective treatments and methods for early detection of Alzheimer’s disease and other brain disorders. In 1980, Dr. Weiner was one of the first investigators to use nuclear magnetic resonance to investigate the metabolism of organs inside a living animal. This technique subsequently became magnetic resonance spectroscopy (MRS). In 1988, his group used MRS to show that the amino acid N acetyl aspartate (NAA), a marker of healthy nerve cells, is reduced in the epileptic focus in the brain. This marker is now used to help identify the epileptic focus prior to surgery in epilepsy patients. In 2004, Dr. Weiner’s group reported that reduced NAA predicts development of Alzheimer’s disease in mildly impaired elderly subjects. They have also demonstrated that brain blood flow is reduced in Alzheimer’s disease and in patients with mild impairment. Dr. Weiner has over 725 published articles. In 2006, Dr. Weiner received the William S. Middleton Award, the highest scientific honor bestowed by the Department of Veterans Affairs. In 2010 he was named one of the “Rock Stars of Science”. He also received the Gold Medal of Paul Sabatier University and the City of Toulouse, France. In 2011 he received the Ronald and Nancy Reagan Research Award from the Alzheimer’s Association. In 2012 he received the Potamkin Award from the American Academy of Neurology and the American Brain Foundation.
  • Dr. Ronald C. Petersen, MD, PhD. received a Ph.D. in Experimental Psychology from the University of Minnesota and graduated from Mayo Medical School in 1980. He completed an internship in Medicine at Stanford University Medical Center and returned to the Mayo Clinic to complete a residency in Neurology. That was followed by a fellowship in Behavioral Neurology at Harvard University Medical School/Beth Israel Hospital in Boston, Massachusetts. Dr. Petersen joined the staff of the Mayo Clinic in 1986 and rose through the ranks to become a Professor of Neurology in 1996. In 2000 he was named the Cora Kanow Professor of Alzheimer’s Disease Research and Mayo Clinic Distinguished Investigator in 2011.

He is currently the Director of the Mayo Alzheimer’s Disease Research Center and the Mayo Clinic Study of Aging and has authored over 800 peer-reviewed articles on memory disorders, aging, and Alzheimer’s disease. He has edited five books, Memory Disorders, Mayo Clinic on Alzheimer’s Disease, Mild Cognitive Impairment: Aging to Alzheimer’s Disease, Mayo Clinic Guide to Alzheimer’s Disease and Mayo Clinic on Alzheimer’s Disease (2013).

Dr. Petersen is one of the recipients of the 2004 MetLife Award for Medical Research in Alzheimer’s Disease and the 2005 Potamkin Prize for Research in Picks, Alzheimer’s and Related Disorders of the American Academy of Neurology. Dr. Petersen also received the inaugural Ronald and Nancy Reagan Research Institute Award in 2004 from the Alzheimer’s Association and the inaugural Leon Thal Prize of the Lou Ruvo Brain Institute in 2007. In 2012 he received the Khachaturian Award of the Alzheimer’s Association and the Henry Wisniewski Lifetime Achievement Award in 2013. In 2011 he was appointed by the Secretary of Health and Human Services, Kathleen Sebelius, to serve as the Chair of the Advisory Committee on Research, Care and Services for the National Alzheimer’s Project Act. Recently, he was appointed to the World Dementia Council by the UK government.

  • Dr. Rachel L. Nosheny, PhD. is an Associate Professional Researcher in the UCSF Department of Radiology & Biomedical Imaging, and a co-Investigator on the UCSF Brain Health Registry, a public registry with over 52,000 participants that facilitates participant and caregiver recruitment and engagement within the PCORNet Alzheimer’s PPRN.  She has over 15 years of research experience in the field of neurodegeneration, spanning molecular/cellular approaches, to analysis of biomarkers in clinical cohorts, to Alzheimer’s disease clinical trial design. She received her Ph.D. in Neuroscience from Georgetown University, and completed a post-doctoral fellowship at Stanford University, before joining the Radiology Department at UCSF.  She recently led the development and implementation of the Caregiver and Study Partner Portal within the Brain Health Registry, which captures study partner-reported data online.  Her current research focuses on identification of early indicators of age- related cognitive decline and Alzheimer’s disease, especially on the role of study partner report in determining cognitive and everyday function and risk of disease.  She serves on the Executive Governance Board of the Alzheimer’s PPRN, which aims to accelerate the development of treatments for Alzheimer’s and related dementias by advancing patient- and caregiver-centered research, engagement, and outreach efforts.

Session Materials

View the session Recording below and download the Presentation.


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March 7, 2017
12:00 pm EDT - 1:00 pm EDT