General Information about the Study and the Researchers

This document applies to the Remote Monitoring portion of the study

 

Kinto develops technology to support caregiving families, and a portion of our work is being funded by the National Institutes of Health.  This page will give you important information about the why this study is being done, what will happen during the study, the risks and possible benefits.  Please read it carefully. 

 

Study Title: AD/ADRD Caregiver Mobile Technology Development

Sponsor: Kinto, Inc.

Principal Investigator: Joseph Chung

Contact Info: 857­600­2273 or email at research@kinto.care       

 

What should I know about this research?

·       Taking part in this research is voluntary. Whether you take part is up to you.

·       You can choose not to take part. There will be no penalty or loss of benefits to which you are otherwise entitled.

·       You can agree to take part and later change your mind. There will be no penalty or loss of benefits to which you are otherwise entitled.

 

Purpose of this Study

Why is this study being done?

 

This study is being done with a grant funded by the National Institutes of Health, Department of Aging, to determine the whether a mobile application can help family caregivers caring for loved ones with Alzheimer’s Disease and related dementias.  As part of this study, Kinto will gather responses to survey questions from users, and data on how people use the app.  Names and other personal information will not be shared with the NIH.

Information about the Study

Who is part of this study?

Kinto will include survey and usage data from family caregivers who are caring for a loved one with Alzheimer’s Disease or a related dementia.

How many people will be in this study?

At least 50 family caregivers will be part of this study.

How long will I be in this study?

The study will end by August 31, 2019.

Can I leave this study at any time?

Yes.   If you do not wish to participate in the study, you have the option to continue your caregiving activities as you were and stop using the Kinto app.  If you would like us to remove your data from this study, please email research@kinto.care.

 

Information about Study Procedures

What exactly will be done to me during this study? 

This is an observational study.  Data on your use of the Kinto mobile app will be analyzed by Kinto staff.  As you use the app, you may be asked for more specific feedback on what you see and how useful the app is to your caregiving activities. Once the study is over, you will not have access to this version of the app.

 

Information about Risks and Benefits

What risks will I face in this study?

The risks involved in this study will be minimal. During the course of this study you may see community messages shared by other caregivers who occasionally express strong emotions and/or profanity.

What will the researchers do to protect me from these risks?

To protect you from these risks, you may avoid looking at the community section of the app.

How can I benefit if I take part in this study?  How could others benefit?

We cannot promise that you will experience any direct benefit from participating in this study. Our primary goal is to use your feedback to improve the Kinto app for the benefit of future users.

Information about the Costs

If I join this study, will it cost me anything?

You do not have to pay anything to be in this study and you will not be charged for use of the usage of this app during the research study period.

Will I be paid or reimbursed for anything for taking part in this study?

You will not be paid for being in this study. If applicable, you may be given a token of appreciation for participating in the study.

Who could profit or benefit from the study results?

This study is sponsored by Kinto, Inc, whose investors and employees have a financial interest in this study.  This includes Joseph Chung, the co-founder of Kinto and lead researcher of this study.

Information about Confidentiality

How will my privacy be protected?

Your information is encrypted using industry standard TLS with AES encryption.

What information about me may be seen by other people and why?  Who are the others that might see it?

Your individual information may be seen by Kinto employees as they analyze how you use the application. and by people that oversee the study, including members of the National Institutes of Health, the Office for Human Research Protections, and the New England Independent Review Board. As part of the NIH study, de-identified information may be shared with researchers in the study results.

What happens to the information about me after the study is over?

The information that you provide will be retained by Kinto at the end of the study.

Contact Information

 

If you have questions, concerns, or complaints, or think this research has hurt you, talk to the research team at the phone number listed above on the first page.

 

This research is being overseen by an Independent Review Board (“IRB”). An IRB is a group of people who perform independent review of research studies. You may talk to them at (800) 232-9570, info@neirb.com if:

·       You have questions, concerns, or complaints that are not being answered by the research team.

·       You are not getting answers from the research team.

·       You cannot reach the research team.

·       You want to talk to someone else about the research.

·       You have questions about your rights as a research subject.