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:
It does not apply to information collected:
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:
How We Collect Your Information
We collect Information in the following ways: –
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.
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: –
Sharing Your Information
The ways in which we may share your Information include the following:
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.
About The Sponsor
Homology Medicines, Inc. is a genetic medicines company dedicated to transforming the lives of patients suffering from rare genetic diseases with significant unmet medical needs by curing the underlying cause of the disease.