Hey all, a cool SF health startup partnering with UCSF and Johns Hopkins is conducting research studies about brain health and neurodegeneration for healthy seniors (64-85) and young adults (18-25), as well as patients with Mild Cognitive Impairment. Their neurocognitive screening tools utilize A.I. and machine learning to detect subtle changes in cognition. Check out their work and share with your friends who may qualify for their studies! Both remote and in-person in San Francisco. www.mirohealth.com or email research@mirohealth.com
As far as I can tell there is no way to sign up without a “clinical research number.”
Also, FYI, terms of service put this squarely in the “hoover up detailed biometric data and sell it to Pharma and other healthcare clients” business model:
“…you understand that we may use your contributions freely for Miro research or commercial products without any obligation to acknowledge or compensate you for them… you understand that Miro has sole rights to any knowledge or property derived from your information.”
Hi Gary,
For these studies all participants have to sign an informed consent form, and on this form Miro specifies the ways they keep the data private and securely stored; they can share the data with the subject’s physician if the subject asks for this, but other than that the data doesn’t leave Miro’s servers.
Hi Edie, thank you for replying here! The TOS seems maximally permissive; why is this necessary if there’s no intent to sell the data?
Hey Gary, no problem.
The reason you weren’t able to sign up yet when you went to the website is that, as a research participant, Miro employees will have to run you through the prescreening and screening process (including informed consent). Then, when ready to participate, you will be invited to the platform where you can access the study and the associated app.
As for your second question, the idea behind the company is to create a tool that is more sensitive than traditional neurocognitive tests and ultimately better suited to the earlier diagnosis of neurodegenerative disorders. The purpose of these studies is to validate the tools alongside traditional paper-and-pencil neurocognitive tests and submit this data to the FDA so that Miro can become officially approved as a medical device. Miro is a for-profit company, so in the Terms of Service specify that they are the sole owners of the data, but their intent isn’t to sell data to anyone to make money. Ultimately the idea is that patients will be able to bill insurance companies for the use of Miro; again, it wouldn’t be necessary or prudent for Miro to sell patients’ data when other avenues exist.
Hope this helps!
Yes, thank you. My perspective on data ownership is doubtless obvious from my questions, but I think progress in this area crucially depends on open discussion and debate. Your presence here is very much appreciated. I won’t sign up for now, but I’ll watch with interest.