Privacy Policy for the ALS Mobile Analyzer

 

Prize4Life is a non-profit organization dedicated to the discovery of diagnostics, treatments, and a cure for amyotrophic lateral sclerosis (“ALS”), also known as Lou Gehrig’s disease and motor neuron disease, using an inducement prize model.

This Privacy Policy describes Prize4Life’s policy regarding the collection, use and disclosure of your personal information you provide when accessing, viewing and/or using our mobile application (the “ALS App”).

By accessing, viewing and/or using our ALS App, you are agreeing to comply with and be bound by the following Privacy Policy.

If you do not agree to this Privacy Policy at any time, you should not access or use our ALS App.

The term “Prize4Life”, “us”, “we” or “our”, refers to Prize4Life the owner of our ALS App.

The term “you” refers to the viewer or user of our ALS App.

We will not collect personally identifiable information or personal health information about you (the “Personal Information”) unless you consent to participate in the Research by registering and thus choosing to provide that information to us. Personal Information includes information that can be used to identify or contact you, such as your name and contact information (such as but not limited to your email-address), including email address, and information about your health, including information about ALS.

1.      Terms of Use

This Privacy Policy forms an integral part of Prize4Life’s Terms of Use, and the provisions thereof, including (without limitation) the provisions regarding limitation on damages, governing law and dispute resolution, apply to this Privacy Policy.

Unless otherwise stated, any defined terms used herein shall have the meaning assigned to them in the Terms of Use.

2.      Your Consent

By registering, accessing, viewing and/or using the ALS App, you consent to:

(i)    The collection, transfer, manipulation, storage, disclosure and other uses of your Personal Information as described in the Terms of Use and in this Privacy Policy, and

(ii)   To the transfer of such information outside of the country where you reside in and outside the U.S.A. and European Economic Area (“EEA”), to other countries for storage, processing and use by us, and to the transmission of data on an international basis.

3.      Collection of Personal Information

Information collected upon registration: When you register to our ALS App, you provide us with Personal Information about yourself, such as your name, username, account password,e-mail address,  and any other personal or preference information that you provide to us.
  • Performance based on mobile phone sensors: The ALS App can collect data, including but not limited to voice recordings and data collected in connection with your performance of specified tasks while holding your mobile device, through sensors on your mobile device, or certain wearable activity devices that allow import into your mobile device, as well as other data that you may have provided to health-related apps separately.
  • Health Surveys and functional questionnaire: The ALS App will ask you to answer questions about yourself, your medical history, and your current health. You may choose to leave any questions that you do not wish to answer blank. The ALS App will also ask you about the way you perform certain daily functionalities.
  • Standard Log Information: The ALS App automatically collects standard server log information, such the type of device from which the ALS App was used, its model and operating system version and details of how you used the ALS App (e.g. history of page requests such as uploading data or signing in and date/time of request).
  • Other information you provide: We also receive other Personal Information you may provide, such as comments or questions you provide while using the ALS App.
  • Contacting us: If you email or otherwise contact us, we may keep your message, email address and contact information to respond to your request. Providing such information by you is entirely optional.

4.      Cookies

As you use our ALS App, we may assign your device one or more cookies to facilitate access and use of the ALS App. Through the use of a cookie, we also may automatically collect information about your activity with our ALS App, such as the time and date of your use and your performance of specified tasks. Cookies do not allow us to gather any Personal Information about you and we do not generally store any Personal Information that you provided to us in your cookies.

5.      Our Use of the Personal Information that You Provide to Us

We may use Personal Information we collect for maintaining and improving our services, sending notices to you, and to protect our rights and the rights of third parties.

With regard to our processing of Personal Information for the Research, our ALS App and our associated services aggregate user-provided and user-generated information, including Personal Information. We separate your account information (e.g., name or email address) from your other data (including survey response and tasks measurements, and including location, medications, voice recordings, and survey and questionnaire answers) and combine your coded research data (without your name) with those of other Registered Participants for research and analysis as further described in this Section below.

We use standard log files and other automatically-collected usage data to: (i) personalize the ALS App, such as by remembering information so that it does not need to be re-entered; (ii) monitor and analyze the ALS App and the Research; (iii) monitor aggregate ALS App usage metrics; and (iv) track your activities on the ALS App and in the Research.

We do not disclose Personal Information to third parties, except if (we) –

  • use your anonymized data, combined with that of other users, for research into ALS by the medical and data research community, and other qualified researchers who have registered to use it and who have agreed to use the data in an ethical manner, to do no harm and not attempt to re-identify or re-contact you unless you have chosen to allow them to do so.
  • according to your wishes the data could potentially be available to you to track your disease status or share it with a clinician of your choice.
  • believe that it is necessary to comply with a law, regulation legal request or legal process and to prevent potentially prohibited or illegal activities; to protect the rights, property or personal safety of Prize4Life, its Users and any other person; to address fraud, security or technical issues; or to enforce our Terms of Use and to protect our rights (including investigation of potential violations thereof) or property;
  • are involved in a bankruptcy, merger, acquisition, reorganization or sale of assets, where your information may be sold or transferred as part of that transaction. In any such transfer of information, we will ensure the confidentiality of any personally-identifying Personal Information involved in such transactions;
  • believe that it is necessary for maintaining or developing our services (such as responding to your requests for customer service); or
  • have obtained your consent, as provided, for example, under Section 2 above.

We may share with third parties certain pieces of aggregated, non-personal information, which does not identify you individually.

6.      Protection of Your Personal Information

  • We take administrative and technical measures to safeguard your Personal Information against loss, theft, and misuse, as well as unauthorized access, alteration, disclosure or destruction.
  • We cannot, however, guarantee the security of Personal Information or other information transmitted to us through the ALS App, or that such information will not be accessed by unauthorized persons. Hacking or other activities outside of the procedures authorized by the Research may result in unauthorized acquisition of, or access to, such Personal Information and other information.
  • Additionally, although we take steps to remove Personal Information that reasonably can be used to identify you directly, such as name or telephone number, from the Research Information, experts in re-identification may be able to reverse our processes and/or attempt to re-identify you if given sufficient cross-reference information.
  • We process Personal Information on servers located in various countries worldwide.
  • We will cooperate with the appropriate regulatory authorities, including local data protection authorities, to resolve any complaints regarding the transfer of personal data that cannot be resolved between us and an individual.

7.      Cross-Border Transfer of Your Personal Information

Although you may access the ALS App or participate in the Research from a location in any country, any Personal Information collected by us in connection with the ALS App or the Research may be transferred to, processed, and stored within other countries. Also, we may transfer your data to other countries or regions in connection with storage and processing of data, fulfilling your requests, and operating the ALS App and the Research. By using the ALS App you consent to the transfer of Personal Information to countries outside of your country of residence, which may have different personal data protection rules than in your country.

8.      Access of the Personal Information and Withdrawal

You are able to review certain Personal Information we have collected through your use of the ALS App and participation in the Research within the ALS App. If you wish to access or amend any other Personal Information we hold about you, you may contact us at als_analyzer_privacy@prize4life.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.

If you would like to withdraw from the Research, you may do so within the ALS App by contacting us at alsfrs_app@prize4life.org to withdraw from the ALS App, Please note that if you withdraw from the Research, we will stop collecting new data from you, but the coded data that you have already provided will already have been distributed and we will not be able to destroy or delete it.

9.      Policy towards Children

Prize4Life does not knowingly collect Personal Information from children under 12.

If Prize4Life becomes aware that a child under 12 has provided Prize4Life with Personal Information without verification of parental consent, Prize4Life shall attempt to remove such information and terminate the child’s account as soon as possible.

Prize4Life recommends that minors 12 years of age or older ask their parents for permission before sending any information about themselves to anyone via the ALS App.

10.     Changes to this Policy

We may revise this Privacy Policy from time to time. Your continued use of the ALS App will be deemed to constitute your acceptance of any and all such changes.

11.     Contact Information

If you have any questions or comments about this Privacy Policy, please contact us at als_analyzer_privacy@prize4life.org.

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Last updated on July 25, 2015.