STUDY: New Cognition metrics

Miro Health, a startup in SF, is doing some incredible work in brain health and is in search of seniors (ages 64-85) for their ongoing studies. They are testing a unique, interactive cognitive assessment platform that yields several metrics for the QS community to monitor, such as:
-motor & executive function
-working memory
-processing speed
I’ve personally joined the development effort and am supporting this work:
www.mirohealth.com

If interested in contributing, it’s easy to submit on-line or please send me a note for more details.

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I tried to experiment with the community side of the Miro product. I was asked to provide some information and then received a “something went wrong, try again later” message. This occurred two consecutive times. I could not find any information about informed consent or data return to participants on the site. My first thought was “scam” but I checked Crunchbase and this seems to be a real company with about $5 million invested, but an obscure business model and rather severe lack of transparency. I suspect that the pathologies of “agile development” have lured me into a test of community recruiting efficacy. This has happened before in the QS community, where we are pitched on a tool only to realize that we’re being “pitched on a pitch.” Clicks are measured and used to refine marketing and recruitment, but no product is actually available. Corine, will you let us know about the substantive work Miro Health is doing in cognition research, with some links to materials, and give us a sense of the ethics policy and data return policy for the studies?

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Gary, Yes!
Right away. I will look into the error right immediately. Thank you for writing.
{UPDATE: This error has been resolved by our Engineering team}

The work that we are doing in incredible, and I believe that your community will find it most useful.

How can I best respond to provide more information? Shall I send a brief description of our work?
Your question on data privacy is a very important one:
Miro follows all electronic standards mandated by the FDA, 21CFR part 11. Further, at the conclusion of our study, we de-identify all participant data.
This is a company imperative and individual accountability at Miro.

Can we connect person-to-person today?

Best to you,
Corine

[Please read] More about Miro Health, who we are:

Our mission
To create a new habitat for personalized discovery in neurological and cognitive health
We are a small start-up in SF, CA, striving for a revolution in digital health

Our commitment
Develop digital solutions that advance neurological health evaluation and individualized medical care
**
Reflect equal intricacies of brain function with intricate descriptive measures
**
Deliver convenience of remote services

Our dedication to privacy and protection
Operate with highest-levels of privacy and data protections to garner and maintain public trust
Lead industry with a code of responsibility

Our values
“Create a unique experience, help brains to be healthy”
Creativity
Ingenuity
Curiousity
Focus
Authenticity
Purpose

Our people
Passionate risk-takers that challenge and inspire each other every day;
We operate inseparably

Hi Corine, thank you for your reply. Glad to talk but really the most useful thing is to have this dialog in public, it creates a record through which everybody can learn. How about posting the terms of service here? Is that possible?

Hi Gary -
I appreciate your response.
Can you help me to understand more? My post is an announcement for our clinical trial study.
The term of service is for voluntary participation. At the conclusion of participation, people gain access to a personal report on how they’ve performed with our digital “brain games” which are the subjects of our tests.

Does that help? Please send any specific topics that I can answer. I’ll do my best to get back with you right away.

Best wishes,
Corine

Thank you Corine. Can you tell us who is directing the clinical study? Also, is there a consent process that includes information about data management?

When I applied to join the study, I found the TOS:

MIRO TERMS OF USE
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Thank you, Gary for clarifying.

Here is some additional information about the clinical study:

Primary Investigator (PI) is Joel Mefford, U.C. San Francisco (UCSF)
The study protocol is approved under Institutional Review Board (IRB) # 120180253, and as such follows FDA compliance mandates including GCP (Good Clinical Practice) guidelines for study and data management.

Hope this answers!

Best to you,
Corine

Miro collects a wide variety of data, which it can make available to others, including Pharmaceutical companies, for the development of therapies. There is nothing in the TOS that seems to guarantee return of data to participants:

You give Miro permission to collect and analyze your voice, body movement, facial expression, finger movements, touchscreen, gyrometer and questionnaire data in order to quantify your cognitive, emotional, social and motor function and to share your results with others who you authorize.
We may ask you for demographic information and other information that may personally identify you such as your name and date of birth. Miro will never provide information that identifies you by name or email to any third party without receiving your consent to do so, unless required by law.
We may ask you for information about your medical history, for example whether you have or have had a cognitive condition.
We may collect information about the devices that you use to access Miro Services. For example, we may collect and store information such as device type, IP address, operating system, and the date and time of use.
USE OF DATA
All of the data collected through Miro products and services is processed and stored for future use. When you use Miro products and services, you agree to the Miro TOS and for Miro to share your data with Miro employees, contractors and collaborators. Miro has relationships with academic research centers as well as therapeutic developers. Your de-identified, anonymized data may be shared with these collaborators for scientific purposes.

Hi there,

A few more important clarifications to the above for you:

  • The Miro analysis does not use the iPad camera/face ID for testing, only voice and touchpad interactions (one of our novel engagement features); the camera is only used pre-study for enrollment/ anti-fraud verification and then these data is discarded within 48-hours of test completion.

  • Miro does not share study data with any pharmaceutical companies or research collaborations. This is solely for FDA study submission purposes.

Please continue to raise any additional questions that you have.
We’d like to ensure absolute clarity here, particularly knowing that you and the QS community are experts with metrics, statistics and data. We hope to earn your advocacy.

Best wishes, and thank you,
Corine

Thank you for engaging here, Corine.

Sounds extremely interesting. Measuring cognitive function accurately and across diverse populations is super tricky. I hope this project goes well!

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Thank you Brian! I’ll post updates as we go forward.