PRIVACY and SECURITY POLICY
Revision date: 11-09-2020
Who We Are
Apellis Pharmaceuticals, Inc. (“Apellis”), a company having its registered office at 100 5th Avenue, Waltham, MA 02451, USA, Tel: +1 (617) 977-5700, e-mail: email@example.com is the sponsor of the study and is responsible for processing your personal data. Apellis has hired the external provider, X Factor Advertising, to support trial recruitment activities.
This policy provides you with the necessary information regarding your rights and our obligations, and explains how, why, for how long, when we process and with whom we share your personal data.
This policy DOES NOT apply to information that is collected through this website but does not identify you in any way, and thus, does not constitute personal data, such as aggregated information about groups (rather than individuals), which we might use to show likely trends or geographic groupings.
How do we collect personal data about you?
We get your personal data from you directly.
Why do we process your personal data?
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 centre in your area, we may ask you to provide us with information about yourself as described below.
What personal data do we process about you?
The personal data we collect may include your contact details such as name, email address, physical address, phone number, as well as limited health information that is necessary to determine if you are an eligible candidate for possible inclusion in this clinical trial. We will only collect health and other personal data that is relevant to this clinical trial.
Why are we allowed by law to process your personal data?
We will only collect and process your personal data after having obtained your prior consent via the registration process.
How do we store your personal data?
The information collected is stored on secure servers in the US West (Oregon) Region 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 data, 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.
How do we share your personal data?
Your personal data will be released or disclosed to third parties. Such parties include:
- Our personnel (including personnel, departments or other companies of the Apellis group);
- The clinical trial site you have chosen, 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. 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 on a need to know basis that have undergone training in security and compliance measures regarding personal data are permitted to handle the data. However, we have the responsibility to process all your submitted information, under the requirements set by the applicable data protection laws and regulations;
- Any competent law enforcement body, regulatory, government agency, court or other third party 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; and
- Third-party service providers (e.g., IT systems providers, cloud service providers, database providers and consultants), or our data partners or a potential buyer in connection with any proposed purchase, merger or acquisition of any part of our business, who are contractually bound to handle your information confidentially and prohibited from disclosing your information to others.
The above third parties are contractually obliged to protect the confidentiality and security of your personal data, in compliance with applicable law.
Please note that such transfers of data may include transfers outside your country to countries which do not implement an adequate level of protection for your personal data under your national or European Union data protection law, such as the United States of America. In such cases, Apellis takes appropriate steps to ensure your data is adequately protected if transferred to such countries. Apellis otherwise has EU-approved Standard Contractual Clauses in place where necessary to provide an adequate level of data protection. Upon request, Apellis will provide further information on recipients of personal data and data transfer agreements with recipients outside the European Economic Area.
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.
How long will we keep your data?
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 or if necessary to comply with our legal obligations, to protect our rights and/or comply with a judicial proceeding, court order and resolve disputes or enforce our agreements.
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What are your rights?
In compliance with data protection and privacy laws, and/or where other contractual elements require, we ensure that you can exercise all applicable data protection rights with respect to your personal data that may be submitted by you via this website, including but not limited to, the right of access and correction, 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. You can withdraw your consent at any time. Your withdrawal will not affect the lawfulness of the processing carried out before you withdrew your consent.
For all requests to exercise your data protection rights, or to submit a complaint and/or a question regarding this policy, please contact our Data Protection Officer at:
- By email: firstname.lastname@example.org
- By fax: +1 503-235-6572, Attn: Privacy Officer
- By postal mail: 33548 Edward Ln. Suite 110, Scappoose, Oregon 97056, Attn: Privacy Officer
Please include your name, study name, and approximate date you prequalified for the study.
If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the data protection authority of your country of residence or work. Please visit this link to find out how you can contact your local data protection authority: https://edpb.europa.eu/about-edpb/board/members_en.