PRIVACY and SECURITY POLICY
Revision date: 6-8-2020
Who We Are
Apellis Pharmaceuticals, Inc. is the sponsor of the study referred to on this website and has hired the external provider, X Factor Advertising, to support trial recruitment activities.
X Factor Advertising gathers and processes your personal information at the request of Apellis Pharmaceuticals Inc., in accordance with this privacy notice and with the 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 when we process your personal data.
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.
In order to determine whether you prequalify for a clinical trial for which we may be identifying potential patients, or to identify a clinical research center in your area, we may ask you to provide us with information about yourself.
The personal information we collect may include your name, email address, physical address, phone number, and certain other personal information including limited health information that is necessary to determine if you are an eligible candidate for possible inclusion in this clinical trial. We will only seek health and other personal information that is relevant to this clinical trial.
The information collected is stored on secure servers employing next-generation technology designed to maintain a secure environment. While all reasonable steps are taken to prevent unauthorized access, use and alteration of personal information, we cannot guarantee the absolute security of such information. Please note that no method of transmission over the internet, or electronic storage, is 100% secure.
Your information will be released to the clinical trial site you have chosen. It may also be partially accessed by contracted parties and contact coordinators working directly with the participating clinical trial sites. In any event, only authorized individuals that have undergone training in security and compliance measures regarding personal information are permitted to handle the data. However, we have the responsibility to process all of your submitted information we may receive from you, under the Privacy Shield Framework guidelines and principles when releasing your information to the participating site you have selected.
Your personal information may be disclosed if, and to the extent, required by law, court order, or other governmental authority, and may be used or disclosed for the specific purposes for which it is collected and as authorized by law. As stated above, your contact information and other personal information, if collected through authorized submission by you, will be sent to the participating clinical trial site you have chosen. This occurs automatically after your submission of information; the screener website will automatically inform the clinical trial site, via email and/or direct transfer, of your interest in participating in the clinical trial.
Our website(s) may also use Google Analytics and Facebook Technologies to customize content, provide advertising, and to collect information about how many visitors we receive, their general geographic location, and how they use our website(s). This feedback helps us to improve offered services and the website user experience. Any data retrieved by us through Google Analytics contains no personally identifying information and is not transmitted back to Google.
Other than the use and transfer of information outlined above, no personal data of any kind that is provided by you, is sold, transferred or used in any way by us, other than in compliance with the conditions described herein.
All information stored by us is kept on our secure servers until the conclusion of the study. Once the study has concluded, all potential patient information that has been submitted as part of the online screening process will be destroyed, unless retention of such information has been authorized by you prior to its submission.
Our websites and/or screener pages employ the use of session cookies which are pieces of information, or markers, that the web server sends to your computer when you access our website(s). Session cookies are sent upon your arrival at our website to provide additional functionality and ease of use; especially helpful to you when you fill out forms. The types of session cookies we use typically expire upon logout or a short time thereafter. In any event, no permanent or perpetual cookies are used, or placed on your device.
If you do not wish to accept the session cookies, please do not use this website. 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.
You may request to have your information removed from our database prior to its eventual destruction. In the event your information has already been passed to the clinical trial site you selected; you will need to contact the trial site directly to remove your submitted information from their database.
To request to have your information deleted, or to be removed from our database, email firstname.lastname@example.org. Please include your name, study name, and approximate date you submitted your information.
For all requests to exercise informational rights, access to data, to request data categories collected, or to submit a complaint, please contact our Data Protection Officer at:
- By email: email@example.com
- By fax: 503-235-6572, Attn: Privacy Officer
- By postal mail: 5 Centerpointe Drive, Suite 400, Lake Oswego, OR 97035, Attn: Privacy Officer
Please include your name, study name, and approximate date you prequalified for the study.
Data and Information Protection Laws
We conform our website(s) compliance to the EU-U.S. and Swiss-US Privacy Shield Framework and Principles. We are committed to subjecting all personal data received from Swiss and European Union (EU) member countries respectively, in accordance to the Privacy Shield Framework regulations and applicable principles to ensure the rights of all EU and Swiss individuals using or providing information on the website(s).
We are responsible for the processing of personal data we receive, and subsequent transfers to contracted and authorized third parties as outlined herein. We are committed to complying with the Privacy Shield Principles for all onward transfers, when applicable, of personal data from the EU and Swiss territories.
Independent Data Processor Compliance
However, in compliance with the Privacy Shield Principles, X Factor Advertising commits to resolve complaints about our collection or use of your personal information. EU and Swiss individuals with inquiries or complaints regarding our Privacy Shield policy should first contact us at:
By email: firstname.lastname@example.org
By fax: 503-235-6572, Attn: Privacy Officer
By postal mail: 5 Centerpointe Drive, Suite 400, Lake Oswego, OR 97035 - USA, Attn: Privacy Officer
The Federal Trade Commission has jurisdiction over X Factor Advertising's compliance with the Privacy Shield.
X Factor Advertising has further committed to cooperate with the panel established by the EU data protection authorities (DPAs) and the Swiss Federal Data Protection and Information Commissioner (FDPIC) with regard to unresolved Privacy Shield complaints concerning data transferred from the EU and Switzerland.
In the event that a complaint has not been resolved, an individual has the possibility, under certain conditions, to invoke binding arbitration for complaints regarding Privacy Shield compliance not resolved by any of the other Privacy Shield mechanisms. For additional information regarding those options please visit: https://www.privacyshield.gov/article?id=ANNEX-I-introduction.
Policy Changes and Updates
By your use of this clinical trial website and/or screener you acknowledge and accept the terms outlined in this Privacy and Security Policy.
X Factor Advertising, 5 Centerpointe Drive, Suite 400, Lake Oswego, OR 97035