Since launching the Study Partner Portal in the Summer of 2016, over 4,300 study partners have joined the Brain Health Registry! In this newsletter, we are excited to share the initial results from analysis of the study partner-reported data collected so far.
A study partner is someone who knows a participant well and can answer questions about changes in the participant’s brain health and day-to-day functioning. Dr. Rachel Nosheny, Assistant Professor of Psychiatry at UCSF, explains that, “study partners are an essential part of brain health research, especially in the Alzheimer’s disease field. When a person with Alzheimer’s loses insight about their own ability to think and remember, study partners can give important insight into changes in the person’s day-to-day functioning and quality of life - outcomes that are important to families, but often left out of traditional research.”
Study partner participation is also often required for enrollment in clinical trials, but until now, there has been no efficient way to gather study partner information remotely and from large numbers of people. “Expanding study partner-reported data to online applications, like we are doing in the Brain Health Registry Study Partner Portal, could revolutionize methods used to screen older adults for memory decline and Alzheimer’s disease in clinical trials,” explained Dr. Nosheny. Together, participants and study partners have a unique and powerful voice in brain health research.
With an interest in understanding how online data from study partners can be used to help identify memory decline in older adults, Dr. Nosheny examined data collected through the Study Partner Portal. Her analysis focused on answering three main questions:
Yes! Using the internet to collect information from study partners is a novel approach. Dr. Nosheny compared study partner-reported changes in a participant’s memory collected from the online Brain Health Registry Study Partner Portal, to study partner data previously collected from a large, in-clinic study called ADNI. These two methods of collecting study partner reports about their participant’s memory yielded very similar results. This supports the idea that online study partner-reported data, such as the study partner data collected in the Brain Health Registry, can be used in future studies.
Yes! The Brain Health Registry asks participants to take an online memory test, called Cogstate’s Card Test, to evaluate different aspects of their memory or cognition. Dr. Nosheny found that participants who performed worse on the Cogstate test were more likely to have study partners that reported a recent decline in the participant’s thinking and memory. This means that what a study partner tells us about the participant’s memory is likely to be an accurate indicator of that person’s cognitive abilities.
In some cases, yes! People with memory decline could potentially lose insight about their own level of function. Therefore, Dr. Nosheny hypothesized that participants with diagnosed mild cognitive impairment (MCI) or Alzheimer’s disease would not be as good as their study partners in recognizing their cognitive decline. The results support this idea, as participants without MCI or Alzheimer’s were equally good as their study partners at recognizing their own cognitive decline. However, participants with diagnosed MCI or Alzheimer’s underreported their decline compared to their study partners. This is consistent with previous in-clinic findings for dementia, indicating that online collection of study partner-reported data is sensitive to detecting a lack of self-awareness in impaired participants.
These encouraging results suggest that online study partner data is likely to be useful to facilitate future Alzheimer’s disease clinical research.
To continue exploring and advancing how study partner data can be captured and utilized, we are excited to announce the launch the next phase of the Study Partner Portal Initiative: Study Partner Return Visits. Just as Brain Health Registry participants come back to the website every 3-6 months for their follow-up visits, study partners will now have the opportunity to return to the Brain Health Registry to answer follow-up questions and provide important updates about their participant. By asking study partners to return to the Brain Health Registry, researchers can analyze the data collected over time, for changes in a participant’s brain health and cognitive function.
If you are a study partner for a participant in the Brain Health Registry, you will soon receive an invitation to take part in this exciting new phase of the Study Partner Portal Initiative. We hope you will continue to engage with us in our efforts to advance brain health research as a study partner!