Brain Health Registry Newsletter - August 2019

August 2019

In the age of powerful new apps and technologies, online thinking and memory tests, games, and tools are being developed with great excitement! However, many of the tests that are currently available have not been validated. In other words, we don’t yet know how these online tests compare to traditional tests administered by researchers in a research clinic. 

Did you know that just by completing tasks in the Brain Health Registry, you are helping us validate online tests? Read on to find out how.

Late last year, UCSF neuropsychologist and BHR investigator Dr. Scott Mackin published results in a leading scientific journalAlzheimer’s & Dementia, using data from Brain Health Registry participants, like you! Dr. Mackin’s results showed that participants who reported that they had been diagnosed with mild cognitive impairment or Alzheimer’s disease scored worse than other participants on the “Card Test”. This finding is consistent with other researchers have found when evaluating Card Test scores from participants who did this test in a research clinic instead of at home. In another recently published study using BHR data, Dr. Brenna Cholerton at Stanford University found that BHR participants with self-reported Parkinson’s disease also had significant differences in their testing results.

BHR scientists, Dr. Michael Weiner, Dr. Scott Mackin, and Dr. Rachel Nosheny, are also leading another exciting research project in collaboration with investigators at Washington University,  the University of Alabama at Birmingham, the Mayo Clinic, and the University of Washington.   This new research study will compare online test results collected in the Brain Health Registry to those collected in-person, in a standard clinical setting. We plan to create new, online versions of two widely-used assessments in the dementia field: the Clinical Dementia Rating Scale (CDR) and the Financial Capacity Instrument-Short Form (FCI-SF). 

The CDR was developed at Washington University and uses interviews with an older adult and their study partner to measure the severity of dementia due to Alzheimer’s disease. The FCI-SF, developed at the University of Alabama at Birmingham, is used to detect decline in everyday financial capacity in older adults, such as balancing a checkbook. Comparing the online assessments in BHR to traditional version of assessments that are administered by an interviewer, in-clinic, will help us determine the validity of the online versions. Validated online versions of the CDR and FCI-SF will be a breakthrough in online research methods that will allow BHR and its collaborators to make significant strides in their research. Read more about these and the related research efforts here!