Akouos, Inc. is the Sponsor of the Sing Registry. The following information describes the personal information we collect, how we hold and share it, and explains your privacy rights.

Our commitment to privacy

We take our responsibility to protect the personal information provided to us seriously. This Privacy Policy explains how we do that, specifically in regard to information collected when you use our website https://singregistry.com/ or otherwise contact us regarding the Sing Registry.

The Sing Registry website (the “Site”) is intended for use by adults with genetic sensorineural hearing loss (“SNHL”), parents and/or legal guardians of children with SNHL, as well as the physicians and audiologists who care for these individuals. When we use the terms “you" and “your” here, as well as in our Terms of Use, we are referring to a user of the Site, whether you are using the Site for yourself or on behalf of another person.

If we change this Privacy Policy

We will update this Privacy Policy from time to time. When we do this, the revised statement will be posted on this page, and where appropriate, by notification on the Site’s homepage. You should check this page frequently to review any changes we have made, because they are binding on you as soon as we post them.

The personal information we collect

When we collect personal information, we are transparent about how we will use it.

We collect information:

  • Through our Site if you choose the “Contact Us” option.
    • If you are a health care provider, we ask you to submit your name, specialty, associated institution, email address, and phone number.
    • If you are a member of the hearing loss community, we ask you to submit your name, postal address, email address, phone number, and whether you have had genetic testing for hearing loss.
    • You may also voluntarily submit information in the message field provided.
  • Through our Site automatically. This usage information includes your IP address, browser type, mobile phone type, domain name, country of browsing location, the date/time and length of your visit, the functions you used, the content you viewed, and the number of times you visited.
  • In our interactions with you via email, phone, SMS (text), in person, or by mail.

Our legal basis for processing your information

We rely upon a number of different legal bases for processing personal information and special category personal information; these include processing personal information where it is in our legitimate interests to do so, where this is necessary for the fulfillment of a contract, when you consent to the processing, or where the processing is necessary to carry out our obligations under the law. Where we rely on our legitimate interests, this means that we use personal information to run our business and to provide the information or services we have been asked to provide.

How we use your information

We may use your personal information in one or more of the following ways:

  • We use the contact information you supply us to respond to your questions and requests.
  • We use the contact information you supply us to provide you information about the Sing Registry.
  • Where you give us permission, we may use your information to contact you regarding our future research and development activities. You can opt out of this type of communication at any time by emailing help@itakecontrolhealth.com.
  • Where you give us permission, we may use your information to gain insight into recruitment efforts for our future clinical trials. You can opt out of this type of communication at any time by emailing help@itakecontrolhealth.com.
  • We may use your information to perform data analysis and identify usage trends.
  • We may aggregate your information with that of other individuals, or otherwise deidentify the information we collect about you, and share that aggregated or de-identified data with third parties, but only in a form in which the information can no longer be used to identify you as an individual.
  • We may use your information to protect our operations, rights, or property.
  • We may use your information to enforce our Terms of Use or this Privacy Policy.

Whom we share personal information with

We may share your personal information with:

  • Akouos employees and independent contractors who require it to perform their jobs.
  • Third-party service providers that support Registry operations, including contract research operations (CROs) and technology providers such as research data collection, Site hosting, email, and SMS vendors.
  • Third party service providers that support our research and development efforts.
  • Official bodies to detect and prevent criminal activity such as fraud, terrorism, and cyber-crime.
  • Auditors, attorneys, and other professional advisors to our business.
  • A third party as part of a corporate business transaction, such as a merger, acquisition, joint venture, or financing or sale of some or all of our assets, including in the context of bankruptcy proceedings.
  • Anyone you give us permission to share it with.

We will never sell your personal information and we take steps to keep your details safe and secure.

Stopping us from contacting you

If you have provided us with permission to use your personal information, you can withdraw your permission at any time by email to help@itakecontrolhealth.com.

Where we keep and process your information

Our business is located in the USA. Your information may be kept on secure servers and databases located in the USA and elsewhere. In the event your information is collected inside of the European Economic Area (EEA), we might transfer and store the information we collect from you outside said area. It may be processed by staff or our service providers outside the EEA, including in the USA. When we do this, we aim to make sure the information is secure and properly protected.

Keeping your information safe

We commit to maintaining the deployment of appropriate security to protect your information wherever it is located, and whether it is in electronic or manual form. To do this we may use a variety of mechanisms depending on where the information is stored and the relationship between us and any recipient organizations.

Your rights

Depending on where you reside, you may have the following rights over your personal information:

Request a copy of the information we hold

You can access the personal information we hold about you. To do so, please contact us by email at help@itakecontrolhealth.com. There is no charge for us providing this information to you. You can also ask for information that you have provided to us in a machine-readable format, so you can transfer it to another organization.

Ask us to not use your information

If for any reason you do not want us to hold or use your personal information, please contact us by email at help@itakecontrolhealth.com. We may need to keep some of your information for legal and business reasons, for example to comply with a regulatory requirement or local laws of the USA.

Have your information corrected

If you think the personal information we hold is wrong, please contact us at help@itakecontrolhealth.com and we will check and correct it if necessary.

How long we keep your information

We endeavor to keep your information for as long as we need it for legitimate business or legal reasons. We will then delete it safely and securely. If you would like us to delete your information, please contact us at help@itakecontrolhealth.com.

How to complain

If you need to make a complaint about our handling of your personal information, please contact us directly at help@itakecontrolhealth.com. If you are unhappy with how we deal with your complaint, you can contact your Country Data Protection Authority if applicable in your country of residence or business incorporation.

How else to contact us

If you have any other questions about your personal information or this Privacy Policy, please contact us by email at help@itakecontrolhealth.com.

Please note that we will not accept telephone calls about your personal information, GDPR, or data privacy questions. Only email inquiries or inquiries in writing and delivered to our corporate offices located at 75 Kneeland Street, 14th floor, Boston, Massachusetts, USA are acceptable.

10 October 2019