RARE-X DATA COLLECTION PROGRAM (DCP) PRIVACY POLICY
The RARE-X Data Collection Program “RARE-X DCP” is a collection of tools, technologies and websites to help collect, store, and share information about patients with rare diseases, their families and caretakers (“Participants”) for research (collectively, the “Services”). Global Genes is committed to protecting your privacy. This Privacy Policy (or “Policy”) applies to Global Genes and its agents. Agents are people who work closely with Global Genes and who sign agreements promising to follow this Policy. Our agents include all entities and individuals that may have access to data collected from or about you through the DCP, based on your sharing and privacy preferences. When this Privacy Policy uses the term “we” or “ours” it means Global Genes and its agents.
This Policy describes the information we will collect through the RARE-X DCP. This Privacy Policy does not cover information that we collected or receive about you in other contexts outside of the RARE-X DCP. For our general privacy practices, please see Global Genes’ General Privacy Policy. Most of the information that Global Genes will collect comes from patients, their caregivers (family members or other legally authorized representatives) (collectively called “Participants”). In addition, Global Genes may collect a minimum amount of information from researchers, clinicians, and patient advocacy group (“PAG”) representatives and other registered users who contribute and access Participant Information through the RARE-X DCP (collectively called “Non-Participant Users of RARE-X”).
Because our policies for these groups are slightly different, this Policy has separate sections for RARE-X Participants and for Non-Participant Users of RARE-X. In addition, it has a section that applies to all users, whether Participants or Non-Participant Users. Please read the sections below that apply to you:
- Information We Collect When a Participant Creates an Account
- Informed Consent for Participants
- Information We Collect When a Participant Adds Another Participant to the Account
- Other Information We Collect about Participants
- How We Use Participant Information
- How We Share Participant Information with Others
- How Long We Keep Participant Information
- Participant Rights and Choices
Non-Participant Users of RARE-X
- How We Collect Non-Participant Account Information
- How We Use Non-Participant Account Information
- How We Share Non-Participant Account Information
- How Long We Keep Non-Participant Account Information
- Non-Participant User Rights
Both RARE-X Participants and Non-Participant Users of RARE-X:
- Information We Automatically Collect from All Users
- How Long We Keep All User Information
- How We Protect Information We Collect from All Users
- All Users in Countries Other than the United States (GDPR Privacy Policy for EU Citizens)
- Updates to This Privacy Policy
RARE-X PARTICIPANTS
Information We Collect When a Participant Creates an Account
To register for the RARE-X DCP, you will create an account. To create your RARE-X account, you will give us your:
- Basic contact information such as your first name, last name, mobile phone, email address.
- Limited demographic information such as your date of birth, age, gender, location, and/or race.
We use this information to make sure that you do not have an account already, to create your account and to verify that you meet the requirements for participation in the RARE-X DCP.
Informed Consent for Participants
To participate in the DCP, you must first review and sign an informed consent and/or authorization form (“Informed Consent Form”). If you create an account and signed the Informed Consent Form, you consent to the collection, use, and sharing of information as described in this Privacy Policy and the Informed Consent Form.
- If you consent to participate in this research RARE-X DCP within fourteen (14) days of account creation, this account creation information is automatically transferred into your research record.
- If you do not meet the requirements for the RARE-X DCP or do not complete the consent process in the fourteen (14) day period, we will delete the account creation information you provided.
Information We Collect When a Participant Adds Another Participant to an Account
If you would like, you will be able to enroll one or more other Participants, such as your child(ren), in this RARE-X DCP by adding them to your account. To do so, you will need to give us the additional Participant’s basic contact information (e.g., first name, last name) and limited demographic information (e.g., date of birth, place they live) to verify that they meet the requirements for participation in the RARE-X DCP.
- If you complete the consent process for this Participant to enroll in this RARE-X DCP within fourteen (14) days of adding them to your account, this Participant’s account registration information is automatically transferred into the Participant’s research record.
- If the Participant does not meet the requirements for this RARE-X DCP, or you do not complete the consent process in the fourteen (14) day period, we will delete the Participant’s information you have provided from our records.
Other Information We Collect about Participants
After you have created an account, we will ask for detailed information about the Participant (“Participant Information”) such as:
- Health history and information. We may ask you to complete questions in surveys about the patient’s health and health treatment history.
- Information related to impact on patient caregivers. We may also ask questions about how the patient’s health condition has affected the patient’s caregivers. If you are interested in answering these surveys, you will do so on the RARE X DCP website.
- Other health care providers. With your permission, we may collect information about the Participant from clinicians, researchers, and other studies in which the Participant is currently enrolled or had participated in.
- Other information. We may have other ways for you to give information about the Participant to us through the RARE-X DCP website, such as uploading test results or other records.
How We Use Participant Information
RARE-X may use Participant Information to create and manage your RARE-X DCP account and may also use your RARE-X DCP information for one or more of the following purposes:
- To contact you, such as providing you technical support, or to assist you in filling out surveys.
- To keep you updated about selected Services. You can opt out of these communications at any time through your account.
- To help us create, develop, operate, deliver, and improve our products and Services.
- To help maintain anti-fraud, account security, and network security.
- To send important notices regarding the RARE-X DCP Services for which you have registered including changes to our terms, conditions, and policies.
- To locate, authenticate, and match your health information.
- For other legal reasons: To enforce our terms and conditions or to protect our rights, privacy, safety or property, and/or that of our employees, users or others
- To aggregate your Participant Information with that of other Participants in order to create general, summary information that is not readily identifiable or related to a specific person.
If you give your permission, we may use email or text message to contact you to:
- ask you to participate in other studies.
- notify you about clinical trials that the Participant might be eligible for.
How Long We Keep Participant Information
There is no limit on the length of time we will keep Participant Information unless you choose to delete your information or there are limits imposed by law. Your use of our Services is voluntary. You may decide not to participate and leave at any time. If you decide to withdraw, we may not be able to delete the information we have already shared. However, we will stop receiving any new information about you and will stop contacting you about our Services, except in the case of serious medical need. Any specific retention policies or steps to withdraw will be described in the Informed Consent Form.
Participant Rights and Choices
As a Participant, you have rights and choices about how we use and share Participant Information. You can choose the amount of Participant Information that you share with us. You can choose who we can share the Participant’s Information with for research and other purposes. These choices are described in more detail in the Informed Consent Form.
You can get a copy of the Participant Information that you directly give to us. To do this, call (+1) 949-248-RARE (7273) or email us at [email protected].
You can stop using the RARE-X DCP website https://dcp2.rare-x.org at any time. Please note that if you just stop using the website, it does not mean that you have quit taking part in the RARE-X DCP.
If you want to quit the RARE-X DCP so that researchers and others can no longer access or use your information you can call us at (+1) 949-248-RARE (7273) or email us at [email protected]. If you quit, you can ask us to delete your Participant information from our digital storage. We will delete your information. But we can’t take it back from researchers or others who have already used it.
Because we have a responsibility to keep backups and archives of data, we may keep a copy of all the Participant Information we collect from you for a short time, even after you ask us to delete it.
If you have questions about your rights and choices or would like more information about your rights and choices, call us at (+1) 949-248-RARE (7273) or email us at [email protected]
For information about how we use cookies and other ways of automatically collecting information, please read Information We Automatically Collect About All Users of our Website below.
NON-PARTICIPANT USERS OF Global Genes
How We Collect Non-Participant Account Information
Researchers, clinicians, PAG representatives, and other authorized users (collectively called “Non-Participant Users”) may create an account to provide Participant Information to the RARE-X DCP or to gain access to Participant Information through the RARE-X DCP website. To create an account as an authorized Non-Participant User, you will need to provide us with your first name, last name, email address, date of birth and the institution or organization with which you are associated (“Non-Participant Account Information”).
How We Use Non-Participant Account Information
Global Genes will use your Non-Participant Account Information to create and manage your account and may also use your information for one or more of the following purposes:
- To enable us to link your account to the accounts of Participants who have consented for you to enter data on their behalf
- To provide you access to Participant Information as permitted by the Participants
- To contact you for RARE-X DCP purposes, such as providing you technical support
- To keep you updated about selected Services. You can opt out of these communications at any time through your account
- To help us create, develop, operate, deliver, and improve our products and Services To help maintain anti-fraud, account security, and network security
- To send important notices regarding the RARE-X DCP Services for which you have registered including changes to our terms, conditions, and policies
- For other legal reasons: To enforce our terms and conditions or to protect our rights, privacy, safety or property, and/or that of our employees, users or others
- To aggregate your Non-Participant Account Information with that of other NonParticipants in order to create general, summary information that is not readily identifiable or related to a specific person
- Verify that you are associated with the institution or organization which you have listed
How Long We Keep Non-Participant Account Information
There is no limit on the length of time we will keep Non-Participant Account Information unless you choose to delete your information or there are limits imposed by law.
Non-Participant User Rights
You can get a copy of your Non-Participant Account Information by by completing the form at https://globalgenes.org/privacy-request, by calling (+1) 949-248-RARE (7273) or emailing us at [email protected] or
At any time, you can stop using the RARE-X DCP website https://dcp2.rare-x.org.
You can ask us to delete your Non-Participant Account Information from our digital storage. We will delete your information. But we can’t take it back from others who have already used it. Because we have a responsibility to keep backups and archives of data, we may keep a copy of all the Non-Participant Account Information we collect from you for a short time, even after you ask us to delete it.
If you have questions about your rights and choices or would like more information about your rights, call us at (+1) 949-248-RARE (7273) or email us at [email protected].
For information about how we use cookies and other ways of automatically collecting Registration Information, please read Information We Automatically Collect from All Users About Their Use of the RARE-X DCP Website, below.
BOTH RARE-X PARTICIPANTS AND NON-PARTICIPANT USERS OF RARE-X:
Information We Automatically Collect from All Users
We may automatically collect technical and navigational information about the interaction of all users with our Services such as computer browser type, Internet Protocol address, pages visited, language of device, precise location, device type, browser type, unique device type and/or identifiers, and/or average time spent on our website.
We may collect usage information about all users using cookies and/or web beacons or other similar tracking technologies. You may reset your web browser to refuse certain tracking methods such as cookies or you may choose to receive a notification of when a cookie is being sent. Please note that if you choose to modify the way we collect information in any way, certain features of our website or Services may not work properly and/or may not be available.
We may use the information we collect in any or all of the following ways:
- To improve your experience with our site
- To tailor features, content, and Services from us to you
- To better understand user interaction with our Services
- We may collect any other information you include in communications with us
We may access information about use of our website or Services in order to create aggregate usage data for both internal use and in some cases public dissemination.
This statistical information about use of the RARE-X website or Services will not contain any specific personal information about you or any other RARE-X users.
How Long We Keep All User Information
There is no limit on the length of time we will keep the information we collect automatically unless the user chooses to delete the information or there are limits imposed by law.
How We Protect Information We Collect from All Users
Protecting the confidentiality of Participant Information and Non-Participant User Information is important to us. We take privacy and security seriously. We use systems and procedures to protect the information that you have provided to us. Here are some of the steps we and our service providers take to ensure the information we collect is private and secure.
- Information we have collected will be stored on protected computers and servers.
- The people who can access this information will be limited to those who need to know.
- Other than as described above, we will not share with others information that could directly identify a user as a Participant or Non-Participant User without the user’s permission.
- We will tell you if there is a serious information breach.
Although we take many steps to protect your information, we cannot promise that the information we collect from you is completely secure. There is a chance that your information could be compromised. We believe the risk is very small, but it is not zero.
All Users in Countries Other than the United States
If you are in another country and use the DCP website or sign up for an account, your information will be transmitted to and stored on servers in the United States. With your permission, your information may be shared with researchers based in the United States or other countries where you do not live.
Updates to This Privacy Policy
We may update this Privacy Policy. We will post updates on this website.
If you have signed a consent for research, changes to the Privacy Policy will not affect the consent you signed.
Questions and Comments
If you have any questions, comments or requests, please contact us at (+1) 949-248-RARE (7273) or email us at [email protected].