Privacy Notice

Last Revised: 06/18/2019

Welcome to the Privacy Policy for the pheNIX study website (the “Website”). Homology Medicines, Inc. has partnered with ClinEdge (“ClinEdge,” “we” or “us”) to assist with certain services for the pheNIX study, including patient recruitment and reimbursement, and hosting the pheNIX study website (the “ClinEdge Services”). This Privacy Policy describes how ClinEdge collects, uses and discloses information about users of the Website, content, applications, services, tools and features (collectively the “Services”).  Please read this Privacy Policy carefully. 

This Privacy Policy applies to information we collect:

• On the Website or through forms on the Website
• In email, text, and other electronic messages between you and the Website

It does not apply to information collected:

• by us, offline or through any other means, including information collected through any other electronic means or any other Website specified by us or a third party;
• by Homology Medicines, Inc., the sponsor of the pheNIX study; or
• by any other third party, including through any application or content (including advertising) that may link to or be available from the Website.

BY USING THE SERVICES, YOU CONSENT TO THE COLLECTION AND USE OF INFORMATION AS SET FORTH IN THIS PRIVACY POLICY.  YOU ALSO ACKNOWLEDGE THAT CLINEDGE MAY PERIODICALLY CHANGE, MODIFY, ADD OR REMOVE OR OTHERWISE UPDATE THIS PRIVACY POLICY AT ITS DISCRETION WITHOUT PRIOR NOTIFICATION, IN WHICH CASE WE WILL UPDATE THE “LAST REVISED” DATE AT THE TOP OF THIS PRIVACY POLICY.

If we make changes that are material, we will use reasonable efforts to attempt to provide notice to you and, where required by applicable law, we will obtain your consent. Notice may be by email to you at the last email address you provided us, by posting notice of such changes on the Website, or by other means, consistent with applicable law. However, it is your sole responsibility to review the Privacy Policy from time to time to view any such changes. The updated Privacy Policy will be effective as of the time of posting, or such later date as may be specified in the updated Privacy Policy. If you do not accept and agree to the terms of this Privacy Policy, including any changes, then you must not access or use the Services.

Information That We Collect

We collect certain information about you to provide you with the ClinEdge Services and may use such information to meet legal, statutory and contractual obligations. We reserve the right to conduct additional processing to the extent permitted or required by law, or in support of any legal or criminal investigation. We will not use information collected about you for any other purpose without your consent, other than for the purposes specified in this Privacy Policy or where there is a legal requirement to do so.

When you use the Services, we may collect certain information about you (“Information”) in the following categories:

• “Personal Information,” which means information that identifies you (either directly or indirectly), including:
  • Full Name
  • Date of Birth
  • Age
  • Zip Code
  • Personal Email or Business Email
  • Home or Mobile Telephone Number
  • Health/Medical Information

• “Aggregate Information,” which means information that does not directly or indirectly identify, and cannot reasonably be used to identify, you. This information may include internet protocol (IP) addresses, browser type, internet service provider, referring and exit pages, operating system, time and date stamp, and/or click stream data.

How We Collect Your Information

We collect Information in the following ways: – 

• Use the Services: we collect Personal Information you provide to us when you fill out a form to be considered for potential study opportunities, input information into the Services, create user generated content, request products, services or information from us, participate in public forums or other activities through the Services, or otherwise interact with us or the Services. 

• Web Analytics: we use third parties’ analytic and tracking tools to better understand who is using the Services, how people are using the Services and how to improve the effectiveness of the Services and its content. Those third party companies may use cookies, pixel tags or other technologies to collect and store Aggregate Information, such as time of visit, pages visited, time spent on each page of the Website, device identifiers, type of operating system used and other website(s) you may have visited. They might combine information they collect from your interaction with Services with Personal Information they collect from other sources. We do not have access to, nor control over, third parties’ use of cookies or other tracking technologies.

The tools we use include the Demographic and Interest Reporting features of Google Analytics.  We do not combine the information collected through the use of Google Analytics with your Personal Information.  Although Google Analytics places a permanent cookie on your web browser to identify you as a unique user the next time you visit our Website, the cookie cannot be used by anyone but Google.  Google’s ability to use and store information collected by Google Analytics about your visits to our Website is restricted by the Google Analytics Terms of Use and the Google Privacy Policy.  You can prevent Google Analytics from recognizing you on return visits to our Website by disabling cookies on your web browser. 

• Online Forms: when we collect your Personal Information, it is secured in our database and stored in portals for sites to securely access and follow up with potential participants to determine eligibility for this study. 
• Website Cookies: We, and our analytics or service providers, may collect information about your visit on an anonymous, aggregate basis. This information may include the time and length of your visit, the pages you looked at on our site, and the site you visited just before coming to ours. We only use this information to measure site activity and to develop ideas for improving our site.  In doing this, we may install “cookies” that collect the domain name of the user, your internet service provider, your operating system, and the date and time of access.  A “cookie” is a small piece of information which is sent to your browser and stored on your computer’s hard drive.  Cookies do not damage your computer.  You can set your browser to notify you when you receive a “cookie”. This will enable you to decide if you want to accept this cookie or not.  If you disable or refuse cookies, please note that some parts of the Website may then not function properly.
• Via Phone Call and Text: you may be contacted by a staff member at a research study site if you meet the study requirements to discuss participation in the study. By providing your phone number and/or email to us through the Services, you consent to being contacted by us.

Do Not Track

Do Not Track (DNT) is a privacy preference that users can set in some web browsers, allowing users to opt out of tracking by websites and online services. We do not recognize DNT.

How We Use Your Information

ClinEdge takes your privacy seriously, and will not share or sell your Personal Information without your consent, other than for the purposes specified in this Privacy Policy or where there is a legal requirement to do so. We only retain your Personal Information for as long as is necessary and for the purpose(s) specified in this Privacy Policy.

The purposes and reasons for processing your Personal Information are detailed below: –

• We may use your Personal Information to provide you with the ClinEdge Services
• We may use your Personal Information to respond to your questions or to provide you with information you requested
• We collect your Personal Information for study and trial qualification
• We collect and store your Personal Information as you expressed interest in participating in a study or trial

Sharing Your Information

The ways in which we may share your Information include the following:

• When we contract or partner with a third party to provide services on our behalf, including Services development and maintenance. We require all third parties to process your Information in accordance with this Privacy Policy and as permitted by applicable data protection laws.
• When we make your Personal Information available to the study research sites for study and trial qualification and to contact interested patients.
• When we share Personal Information with third parties in connection with the sale of our business (including merger, acquisition, or sale of all or a material portion of its assets, change in corporate control, or insolvency or bankruptcy proceedings),
• To enforce our Terms of Service or rules, to ensure the safety and security of our users and third parties, to protect our rights and property and the rights and property of our users and third parties, to investigate fraud, to respond to a government request, to comply with legal process, including judicial warrant, rule, order or subpoena or in other cases if we believe in good faith that disclosure is required by law or regulation.
• In addition, we may share Aggregate Information with third parties, however you will not be personally identifiable from such information.

Your Controls and Choices

We provide you the ability to exercise certain controls and choices regarding our collection, use and sharing of your information, including the right to request access to the Personal Information we hold about you and that we amend or delete it.

You may exercise your controls and choices, or request access to your Personal Information, by modifying your profile or by contacting us at privacy@clin-edge.com or following instructions provided in communications sent to you. Please be aware that, if you do not allow us to collect Personal Information from you, we may not be able to deliver certain products and services to you, and some of our services may not be able to take account of your interests and preferences. If you have questions regarding the specific Personal Information about you that we process or retain, please contact us at privacy@clin-edge.com.

Data Security and Integrity

The security, integrity and confidentiality of your information are important to us. We have implemented technical, administrative, and physical security measures that are designed to protect user information from unauthorized access, disclosure, use and, modification. From time to time, we review our security procedures to consider appropriate new technology and methods. Please be aware though that, despite our best efforts, no security measures are perfect or impenetrable.

The safety and security of your Personal Information also depends on you.  Where we have given you (or when you have chosen) a user name or password for access to certain parts of our Website, you are responsible for keeping this password confidential.  Do not share your password with anyone.

How Long We Keep Your Personal Information

ClinEdge retains Personal Information for as long as is necessary to comply with our legal obligations and we have strict review and retention policies in place to meet these obligations. We are required in some cases to keep your basic Personal Information (name, address, contact details) for a minimum of 6 years after which time it will be destroyed.

Where you have consented to us using your details for direct marketing, we will keep such information until you notify us otherwise and/or withdraw your consent.  You may remove your information from our contact list by submitting a request here (need URL to link to removal request page).

Children Under 13

Most of the services available on this Website are intended for persons 18 years of age and older. Any individual who requires information about any of our services, must be 18 and over. We will not knowingly collect, use or disclose Personal Information from a minor under the age of 18, without obtaining prior consent from a person with parental responsibility through direct off-line contact.  We will provide the parent or guardian with notice of the specific types of Personal Information being collected from the minor and the opportunity to object to any further collection, use, storage of such information. We abide by the laws designed to protect children. If we become aware that we have unknowingly collected Personal Information from persons under the age of 13, we will make commercially reasonable efforts to delete such information from our database.

If you are the parent or guardian of a minor child who has provided us with Personal Information, you may contact us at privacy@clin-edge.com to request it be deleted.

Your California Privacy Rights

This Privacy Policy describes how we may share your information for marketing purposes. It applies to all users of the Services, including California residents.

If you are a user of this service and a California resident under the age of 18, you may request to have your posted content or Personal Information removed from the publicly-viewable portion of this Website by emailing us at privacy@clin-edge.com. In certain situations, content or Personal Information cannot be removed.

As a California resident, you may contact us with any questions or to request a list of third parties to whom we may disclose information for such third parties’ marketing purposes and the categories of information we may disclose. See Contact Us below.

Accessing or Correcting Your Information

You may send us an email at privacy@clin-edge.com to request access to, correct or delete any personal information that you have provided to us.  We may not accommodate a request to change information if we believe the change would violate any law or legal requirement or cause the information to be incorrect.

Contact Us

For any questions regarding the Services or this Privacy Policy, you can contact us by sending an email to privacy@clin-edge.com or by phone at 857-496-0054 or at: ClinEdge, Attn: Bob Place, 108 Myrtle Street, Suite 201, Quincy, MA 02171.