PRIVACY NOTICE (effective September 30, 2020)
Who We Are
MeiraGTx is the sponsor of the LUMEOS study and has hired the external provider, X Factor Advertising, to support trial recruitment activities.
X Factor Advertising gathers and processes your personal information on behalf of MeiraGTx in accordance with this Privacy Notice, while adhering to relevant data protection regulations and laws. This Notice provides you with the necessary information regarding your rights and our obligations and explains how, why, and in what time and manner we process your personal information.
This Privacy Notice explains how MeiraGTx as the LUMEOS study sponsor and X Factor Advertising as the operator of this website (also referred to as “we” or “us” in this Privacy Notice), each within their respective definitions, roles, and authorities, collect and may use information about you that you submit on this website and the actions taken to help protect the privacy and security of that information. This notice DOES NOT apply to information that is collected through this website that does not identify you in any way, such as aggregated information about groups (rather than individuals), which we might use to show likely trends or geographic groupings.
In compliance with data protection and privacy laws, and/or where other contractual elements require, we ensure that you can exercise all applicable informational rights with respect to your personal information that may be submitted by you via this website, including but not limited to, the right of access and correction, submitting a complaint, objecting to data processing, requesting data deletion, restricting certain conditions of data processing, and requesting information and further clarification of the categories of data collected and transmitted while using this website.
By using this website, you consent to the collection and use of information as set forth in this Privacy Notice, and the data practices described herein. Please do not use this website if you do not agree with the terms set forth in this Privacy Notice.
We may periodically update this Notice. We encourage you to visit and review this notice periodically to be informed of changes in how we may be using your information. Your continued use of the Site after the posting of any changes to this Privacy Notice shall constitute your agreement to be bound by any such changes. Any changes to this notice are effective immediately after posting.
Purpose and Scope
This Notice applies to all personal information gathered for use and on behalf of MeiraGTx through this website (the “Site”). The purpose of the Site is to obtain information about your interest in participating in the LUMEOS clinical studies which you may be qualified (“Purpose”). You understand and agree that by registering or providing personal information through this Site, you may be contacted in connection with the Purpose. We make no guarantee that you will be contacted for any clinical study or that if you are contacted, that you will qualify for participation.
Why we process your information
We process personal information for the purposes of:
- Collecting and storing your personal information, as you expressed interest in the study.
- Assessing your eligibility for the study.
- Providing your personal information to the study research sites for study and trial qualification and to contact interested patients.
We process your personal information for the above purposes based on one of the following legal bases:
- Fulfilling the legitimate business interests pursued by us, our service providers acting on our behalf or by a third party insofar as such interests do not pose a high risk to your rights and freedoms;
- With your consent which will be requested and given via the Site or through other consent mechanisms provided to you;
- Compliance with applicable laws or regulations.
We will not share, sell or otherwise use your personal information collected about you for any other purpose without your consent, other than for the purposes specified in this Privacy Notice or where there is a legal requirement to do so.
Information That We Collect
We may collect certain information about you in the following categories:
“Personal Information,” which means information that identifies you (either directly or indirectly), including:
- Full Name
- Email address
- Home or Mobile Telephone Number
- Zip Code / Post code
- Country of residence
- 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:
Personal Information: We collect Personal Information you provide to us when you fill out a form to be considered for the. When we collect your Personal Information, it is secured in our database and accessed through secure portals for sites to securely access and follow up with potential participants to determine eligibility for this study. You may be contacted if you meet the study requirements to discuss participation in the study. By providing your phone number and/or email to us, you consent to being contacted by us.
Some of these cookies are essential to the functionality of this website and must remain enabled. These cookies activate when you provide input on this website to assure basic functionality; especially necessary to filling out forms, making selections, etc. These essential cookies cannot be disabled. However, they are session cookies, which typically expire shortly after logout or use of this website.
This website may also employ non-essential cookies, enabled by us or by third parties, whose interaction with this website helps to customize content, provide advertising, collect information about how many visitors we receive, their general geographic location, and how this website is navigated and used. This enables us to improve offered services and the website user experience. Any and all information collected by both essential and non-essential cookies is anonymized and therefore contains no personally identifiable information.
For all non-essential cookies employed on this website, we have included the ability to Manage Cookies which allows you to enable or disable them for that session only. You may also manage cookies at any time through your browser settings. To find out how to manage cookies, please visit www.aboutcookies.org, then select “How to Control/Delete Cookies” and follow the instructions for your browser. If you do not approve of the use of any cookies, please do not use this website.
If we process personal information based on your consent or your explicit consent, you have the right to withdraw your consent in whole or in part at any time. Once notification that you have withdrawn your consent is received by us, we will no longer process the personal information for the Purpose to which you originally consented unless there are legitimate reasons that override your interests, rights and freedoms (for example, to comply with a legal obligation), or for the establishment, exercise, or defense of legal claims. The withdrawal of your consent does not affect the lawfulness or regulatory compliance of such processing that occurred before its withdrawal. Should you elect to withdraw consent to future processing of your personal information, we may not be able to contact or interact with you as originally indicated when you first provided your consent.
The data protection and security of your personal information is important to us. We employ the use of reasonable physical, electronic, and administrative measures along with technology safeguards that are designed specifically to protect your personal information from loss, unauthorized access, misuse, disclosure, alteration, and unintended destruction. However, regardless of our efforts and the device you use to access the Site, it is possible that third parties may unlawfully intercept or access transmissions or private communications over an unsecured transmission or through other nefarious means.
Data Retention / Deletion
Subject to the terms stated below, and other consent guidelines contained herein, we will retain your personal information for as long as needed for the Purpose for which it was collected. In some cases, we may be required to retain your personal information for a longer period where applicable laws or regulations require or allow us to do so, after which it will be deleted from our database(s) in a manner consistent with applicable and current technologies to ensure that it cannot be reconstructed or identified. You may also request deletion of your personal information prior to the stated term of retention expiration if you no longer wish to remain registered with the Site by sending an email to the Data Processor at firstname.lastname@example.org.
Children Under 13
We will not knowingly collect, use or disclose personal information from a minor under the age of 18. 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 email@example.com to request it be deleted.
We have taken protective measures to ensure the confidentiality, integrity, availability, and security of personal information when it is transferred across international and country borders. For all cross-border transfers, we use data transfer agreements based on Standard Contractual Clauses or other appropriate transfer mechanisms as required by law in each jurisdiction. In the event that your personal information is shared with service providers or others who process personal information on behalf of MeiraGTx and who are located outside your country of residence, it is our practice to enter into the applicable and appropriate contracts that require those parties to comply with applicable data protection laws.
Data Subject Rights
In some jurisdictions you may be entitled to certain or additional rights in and to your personal information, subject to certain conditions and exceptions outlined herein and/or contained in applicable jurisdictional law. These rights MAY include the following:
- Access, rectify and erase your personal information: You may have the right to request access to information that we hold about you; request corrections or updates to your personal information; or, in some cases, ask us to erase your personal information to the extent that we are not required to retain it by law.
- Restriction of processing: You may have the right to request the restriction of processing of your personal information, in which case, your personal information will only be processed for certain purposes.
- Data portability: If processing is based on your consent or a contract you have entered into with us, you have the right to receive the personal information which you have provided to us in a structured, commonly used and machine-readable format and you may have the right to transmit the personal information to another entity without hindrance from us.
- Object: Where we rely on legitimate interests as a legal basis for processing personal information, you have the right to object, on grounds relating to your situation, at any time to the processing of your personal information by us and we are required to no longer process your personal information. If you exercise this right, your personal information will no longer be processed for such purposes unless otherwise authorized by law.
- Submit Complaints: You also have the right to lodge a complaint with a data protection authority or equivalent government entity if you are not able to resolve a problem directly with us and wish to make a complaint regarding the use of your personal information.
MeiraGTx, as sponsor of the study, have instructed X Factor Advertising not to provide us with any identifying information about you. Any data MeiraGTx receives is anonymized and/or in de-identified form and contains no individually personally identifying information. Therefore, if you wish to exercise your personal information rights, or if you have questions as to which personal information rights apply to you, please contact X-Factor Advertising, as follows:
- fax: 503-235-6572, Attn: Privacy Officer
- email: firstname.lastname@example.org
- postal mail: 33548 Edward Lane, Suite 110, Scappoose, Oregon 97056 Attn: Privacy Officer
To further protect your privacy and the security of your personal information, MeiraGTx has instructed X Factor Advertising, to take reasonable steps to verify your identity before complying with such rights requests. To help X Factor Advertising identify your personal information, please inform them that your request relates to the LUMEOS study recruitment site and include the approximate date of your personal information submission.
Should you have questions about the personal information that we process, or if you have a question, concern, or are not satisfied with how your Rights Request is being handled or would like to inquire about your legal rights in and to your personal information, please contact the MeiraGTx Global Data Protection Representative via e-mail at email@example.com.
Dispute / Complaint Resolution
Any personal information deletion or rights requests should first be addressed to X Factor Advertising at firstname.lastname@example.org and should include the previously outlined information to process the request. Any additional questions, concerns, or complaints regarding the use of your personal information should be directed to MeiraGTx Global Data Protection Representative at email@example.com.