While many clinical trials are being impacted by COVID-19 due to self-isolation, social distancing, travel limitations and site closures, fewer interruptions are being felt in the world of the virtual clinical trials and observational studies, many of which exist in the form of an online survey that takes 15 minutes or less to complete. We spoke with Dr. Matt Huentelman of the MindCrowd study and Dr. Rachel Nosheny of the Brain Health Registry (BHR) about how their online-based studies continue to collect important data related to Alzheimer’s and the brain during times of crisis.
The Benefits of Remote Clinical Trials
While the COVID-19 crisis underscores the value of being able to conduct some trials remotely, there were already many benefits to going virtual. “Harnessing the power of connecting virtually makes research participation more accessible to more people, such as those who don’t live near a study site or can’t afford to take time off from work to travel and complete lengthy, in-person tests,” says Dr. Rachel Nosheny of BHR.
While there are some aspects of in-person visits that can’t be done remotely, such as PET or MRI scans, there are many things that can be accomplished successfully. “Surveys about changes a person has noticed in their own memory and thinking, surveys about their ability to perform everyday tasks, and studies around genetics (through mailed saliva kits) all lend themselves well to virtual visits,” Dr. Nosheny says. These types of tests can also be completed at a greater frequency than in-person visits, helping give researchers a more complete picture of brain health and how it changes over time.
More than 70,000 people are enrolled in the observational online BHR study
, which involves answering a few demographic questions and taking a 10-15 minute survey online, without ever being seen in person. “We also have projects in which we are asking our participants to do more, such as get a brain scan at a hospital or provide a blood sample at a local site, once these are once again possibilities,” Dr. Nosheny said. The online information provided, when combined with the in-person information, gives her team a unique opportunity: “We will better be able to understand how virtually-collected data relates to the more traditional measures of brain health and disease.”
Dr. Matt Huentelman of the MindCrowd study agrees that the benefits of virtual participation in research are many. Like the BHR test, the MindCrowd test, an Internet-based research study of the brain, takes 10 minutes, which is far less time than it takes to complete an episode of that favorite sitcom you’ve been streaming. MindCrowd launched in 2013 and includes over 135,000 participants. “Our goal is to use the Internet to engage the largest-ever research group that represents the widest diversity possible,” says Huentelman. “In just minutes, you will help us better understand how the brain works and learn ways that everyone might be able to best preserve their memory, helping us to match cognitive healthspan with human lifespan.”
The user-friendly MindCrowd website allows participants access through any desktop, laptop, or tablet, with a mobile phone option in the works. The site is also available in English, Spanish and Mandarin – so you can participate in the study in the language that you are most comfortable using. “Scientists still don’t fully understand many of the factors that lead to differences in our memory, thinking and decision making. Our goal is to study all types of people and ultimately learn how to slow down the aging of our brains and prevent diseases like Alzheimer’s,” Huentelman says.
Data Informs Our Futures
“Information our participants provide is crucial for understanding how our brains change over time, especially during the aging process,” Dr. Nosheny says. Moreover, participating in clinical trials
has the potential to help not only participants, but also those living with Alzheimer's disease or who are at risk of developing it. It allows individuals to gain access to potential treatments before they are widely available and receive care at leading healthcare facilities — often free of cost — while participating in important medical research.
Alzheimer’s doesn’t stop — and neither do our volunteers. Learn how you can use your time and talent to make an impact from home.
Now is absolutely the time to get involved, says Dr. Huentelman. “One of the many beauties of an Internet-based study means that we do not anticipate a stopping point,” he says. “MindCrowd is in our seventh year. We are in this for the long haul, and you can be assured that we will be here continuing our research.”
Both Dr. Nosheny and Dr. Huentelman have seen many examples of researchers’ willingness to work together and share data during the current crisis. “Now, more than ever, we’ve gotten requests to share our findings on virtual assessments so that other investigators can continue their research while many people are unable to come into clinics and hospitals during the COVID-19 crisis,” Dr. Nosheny says. “This collaboration between researchers and participation from people in communities across the country will help shape the future.”
Protecting The Next Generation
There are varieties of reasons someone may want to get involved in this type of research, whether it is their own health, or their family history. Whatever the reason, Dr. Huentelman assures people that taking an Internet-based study should not be daunting. “The Internet is open 24/7. We are able to engage with people who typically could not dedicate an entire day to an in-person trial and we are reaching people who haven't volunteered for scientific research in the past. If you have a few minutes to join us, please do. You can help brain research, whether you are 18 or 80 or even older,” he says.
Like many other families, Dr. Nosheny and her husband are juggling working from home with the world of e-Learning for their two young sons. “It’s a challenge, but we are safe at home together and I feel incredibly lucky to be able to continue my dementia research during this time.”
Ever since moving to the San Francisco Bay Area, Dr. Nosheny has loved running through the redwood forests near her home. “There is something very comforting about running through these giant trees that have weathered storms, fires and droughts, for hundreds or thousands of years. It puts in perspective our collective ability to weather the next few seasons of hard times.”
We continue our commitment to research. We are in this together.
In addition to studies like MindCrowd and BHR, you can also sign up for Alzheimer’s Association’s TrialMatch to find active clinical trials and studies you may qualify for.
About: Dr. Rachel L. Nosheny
Dr. Nosheny is a neuroscientist focused on clinical Alzheimer’s disease and aging research, including Alzheimer’s disease biomarkers and remote assessments of cognition. Her work is funded in part by the National Institute on Aging, the Alzheimer’s Association, and the California Department of Public Health. She is a BHR Co-Investigator and Assistant Professor of Psychiatry, UCSF. Learn more about the BHR study.
About: Dr. Matt Huentelman
MindCrowd is the vision of Dr. Huentelman, who believes that expanding the scope of genetic research will lead to critical advancements in understanding and treating brain disorders. His lab at TGen studies the genomics of human neurological traits and has a specific focus on learning, memory and Alzheimer's disease. He has authored and published over 75 peer-reviewed scientific articles. His work is funded in part by the National Institutes of Health, the McKnight Brain Research Foundation, and the State of Arizona Department of Health Services. Learn more about MindCrowd.