Frequently Asked Questions
What are the Mind Share Studies?
The Mind Share studies are a collection of studies we will be running to analyze the relationship between lifestyle, behavior, medical conditions, and cognitive diseases such as mild cognitive impairment, dementia, and Alzheimer’s disease. We believe this is an important step to improve treatment in diagnosed individuals and increase quality of life.
Who is eligible for this study?
The target population of this study is individuals over 18 years old who have been diagnosed with Mild Cognitive Impairment, Alzheimer’s disease, or another form of Dementia. People under 18 years old or living outside of the United States will not be allowed to participate.
We encourage everyone else to participate. Data provided from individuals who have never been diagnosed with a disease and data from individuals who express difficulty reading English is still extremely valuable. The data we collect from them may be used for comparison purposes in other ways related to the study.
How do I join the study?
- Download the Mind Share app onto your iPhone or iPad.
- Review the eligbility questionnaire.
- Review the informed consent form.
- Electronically sign the consent form.
- Create a BrainBaseline username and password.
- Log into the app.
- Complete the surveys.
- Complete the BrainBaseline tests.
- Repeat the surveys and BrainBaseline tests as instructed.
Can I use an iPad and iPhone for the study?
Yes you can install the Mind Share app on either an iPad, iPhone, or both. Your data will sync across devices as long as you are online. Currently, health data (e.g., number of steps walked; amount of sleep) is only collected on the iPhone.
How long do I have to complete tests and surveys?
The MindShare study is a long-term study that will compare survey responses, cognitive measures, and behavior data over time. In order to ensure that data from each measure are collected relatively close to one another in time, we have set limits on how many days each test is available. The icon for each survey and test includes how many days are left to complete each test and survey.
Why do I have to take the tests multiple times?
A major goal of the MindShare study is to better understand how fluctuations in the cognitive symptoms of MCI and dementia relate to fluctuations in patients’ health and behavior. To do this, we collect data on the same tests at multiple points in time to see whether changes in health or behavior relate to changes in performance on the various cognitive tasks. As a result, completing the tests multiple times will help provide a clearer picture of the relationship between overall health and the cognitive symptoms of MCI and dementia.
What do the charts in the dashboard mean?
Each time you complete a cognitive test, a data point will appear in the chart on your dashboard. As you complete the tests multiple times, you will see multiple points appear on the graphs and this will allow you to track your performance on each test over time. Each point represents where your performance stands relative to the general population and the numbers on the right side of the graph indicate your ‘percentile rank,’ or the percentage of people you scored better than on a given test.
Why do you want access to my health information?
The MindShare application collects both subjective data about exercise and activity levels through various questionnaires. However, subjective reports can only be obtained infrequently and may not always be accurate. In order to obtain a continuous, objective measure of activity levels we have designed the application to collect activity data from your iPhone’s Health app (e.g., number of steps walked; amount of sleep) continuously over the course of the study. Your phone collects these data itself when ‘Fitness Tracking’ is turned on or when you otherwise agree to share that information with the Health app.
How do I change my share settings for health data?
- Health data settings are controlled within the settings app on your iOS device.
- Open the Settings app on your iOS device.
- Go to the Privacy tab.
- Go to Health in the list of apps and services.
- Select Mind Share from the list of apps.
- Edit the settings based on what data you want to share with the application. You can disable all the buttons if you do not wish to share any data with the Mind Share app.
How do I edit or disable notifications?
- Open the Settings app on your iOS device.
- Scroll down and select the Mind Share tab.
- Go to Notifications.
- Here you can edit the app's notification settings.
- Disable the notifications using the toggle titled "Allow Notifications".
Who is my information shared with?
Data from this study are available to study investigators, study partners, and authorized personnel. To guard confidentiality, only a special code number will be used as an identifier on questionnaires, and all records, forms, and data will be kept on secure servers. De-identified data may be shared with other authorized researchers after the completion of the study.
How is the information I share with the Mind Share Studies protected?
Participant records are maintained in a confidential and secure manner. Data collection forms carry only study identification numbers. All records are stored securely on HIPAA compliant servers. Standard measures exist for all computerized records, which limit data access to selected research project personnel. The electronic data are protected by four secure layers of authentication; specifically, to access the electronic data an individual needs a) access to a machine on the internal network b) access to the database server c) access to the database d) access to the database table. More information can be found in the Informed Consent.