Effective date: July 1st, 2020
Registering for the Study through NeuroCoach
In order to participate in the Study, we ask that you create an account through the NeuroCoach App. You must affirmatively consent to participate in the Study prior to creating your account. We will inform you of the purposes for which we are collecting, processing, and using your personal data and we will obtain your consent through an informed consent process within the app. To provide your informed consent, you will be asked to provide your first and last names, as well as your signature. To create an account after consenting to join the Study, you must also provide your email address, telephone number, and create a password.
Information We Collect
In addition to the data we collect in registration for the Study, we collect the following data through the NeuroCoach App:
Data Imports. The NeuroCoach App allows you to import data from the iOS Health app, including heart rate, daily step counts, distance walked and flights climbed into the NeuroCoach app and study. You may also give permission to import certain data that you may have provided to other third-party applications. We are not responsible for the data practices of third parties from which you may elect to import data and you are advised to consult their privacy policies separately. You may choose not to import these data types and to still participate in the Study.
Health Surveys. With your permission, we collect and process some personal data that is necessary for the purpose of the study. To better understand your evolving health, we will ask you to answer questions about yourself in relation to your stroke. You may choose to leave any questions that you do not wish to answer blank.
Standard Log Information. We automatically collect standard server log information, Including the dates & times you access the NeuroCoach app, health information such as heart rate, blood pressure, and steps taken, as well as your progression in our study (e.g. daily exercise compliance, difficulty of the exercises assigned, and surveys).
Other Information You Provide to Us. We also receive other information, including personal data that you may provide to us, such as comments or questions you provide to us.
How We Use Information
How We Disclose Information
When we work with third parties who provide services on our behalf, we take steps to limit the personal data provided to them to that which is reasonably necessary for them to perform their functions for the allowable purposes listed above. We require them by contract to agree to only process the personal data in accordance with our instructions and to maintain the security and confidentiality of such information by applying adequate technical and organizational measures.
To the extent permitted by applicable law, we may disclose your information if required to do so by law to comply with state and federal laws, in response to a court order, judicial or other government subpoena or warrant, or to otherwise cooperate with law enforcement or other governmental agencies.
We also reserve the right to disclose your information that we believe, in good faith, is appropriate or necessary to (i) take precautions against liability, (ii) protect ourselves or others from fraudulent, abusive, or unlawful uses or activity, (iii) investigate and defend ourselves against any third-party claims or allegations, (iv) protect the security or integrity of the NeuroCoach App and the Study and any facilities or equipment used to make the NeuroCoach App or Study available, or (v) protect our property or other legal rights (including, but not limited to, enforcement of our agreements), or the rights, property, or safety of others. We will notify you of any such disclosures.
Information about our users, including personal data, may be disclosed and otherwise transferred to an acquirer, successor, or assignee as part of any merger, acquisition, debt financing, sale of assets, or similar transaction, or in the event of an insolvency, bankruptcy, or receivership in which information is transferred to one or more third parties as one of our business assets, to the extent and in the way as prescribed by applicable law.
As described above in the “How We Use Information” section, we will combine your Study data with those of other Study participants. The combined Study data will be uploaded to a secure REDCap database, for storage and analysis. Researchers from the Study team accessing data through the REDCap database will analyze the data and report findings back through scientific publications.
How is my Health app data handled?
Do Not Track
We do not track the NeuroCoach App visitors over time and across third party websites or online services to provide targeted advertising, and we do not specifically respond to Do Not Track (“DNT”) signals.
NeuroCoach uses appropriate physical, managerial, and technical safeguards that are designed to protect the confidentiality, integrity and security of personal data that we collect and maintain against accidental or unlawful loss, theft and misuse and unauthorized access, disclosure, alteration destruction, or any other type of unlawful processing. We cannot, however, fully guarantee the security of personal data or other information transmitted to us through the NeuroCoach App or the Study.
We take steps to ensure that your personal data is kept in de-identified format by removing personal data that reasonably can be used to identify you directly, such as name or telephone number, from the research study data. However, experts in re-identification may be able to reverse our processes and/or attempt to re-identify you if given sufficient cross-reference information. Total anonymity cannot be guaranteed.
Your Rights and Choices
Subject to applicable law, you may have certain rights regarding the personal data we maintain about you. You may have the right to request access to and receive information about the personal data we maintain about you, or have your personal data rectified, blocked or deleted if it is incorrect, inaccurate or outdated. Following your request, we will accommodate your enquiry as required by applicable law. You maintain the authority to request to review the personal data we have collected through your use of the NeuroCoach App and participation in the Study. If you wish to access, rectify, delete or block any other personal data we hold about you, you may contact the Study director at firstname.lastname@example.org. Please note that while any changes you make will be reflected in active user databases within a reasonable period of time, we may retain all information you submit for backups, archiving, prevention of fraud and abuse, analytics, satisfaction of legal obligations, or where we otherwise reasonably believe that we have a legitimate reason to do so, as permitted by applicable law. If you would like to withdraw from the Study, you may contact either the study coordinator (email@example.com), or director (firstname.lastname@example.org) and request to be withdrawn. You can withdraw any consent you have provided to us at any time and free of charge. Please note that if you choose to withdraw from the study, we will stop collecting new data from you, but the coded study data that you have already provided will be kept in our records unless you specifically request it to be deleted as well. If you have questions about your rights and choices in relation to your personal data, or would like to request additional information, please contact email@example.com.