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. RARE-X is committed to protecting your privacy. This Privacy Policy (or “Policy”) applies to RARE-X and its agents. Agents are people who work closely with RARE-X and who sign agreements promising to follow this Policy. When this Privacy Policy uses the term “we” or “ours” it means RARE-X and its agents.

This Policy describes the information we will collect through the RARE-X DCP. Most of the information that RARE-X will collect comes from patients, their caregivers (family members or other legally authorized representatives) (collectively called “Participants”). In addition, RARE-X may collect a minimum amount of information from researchers, clinicians, and patient advocacy group representatives (PAGs) 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 a separate section for RARE-X Participants and for Non-Participant Users of RARE-X. The other sections apply to all users. Please read the following sections of the Privacy Policy that apply to you.

RARE-X PARTICIPANTS

Information We Collect When You Create 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 first name, last name, mobile phone, email address and date of birth. 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

If you consent to participate in this research RARE-X DCP within 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 set time, we will delete the account creation information you provided.

Information We Collect When You Add Another Participant to Your 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 first name, last name and date of birth.

Additionally, we will collect the Participant’s age and 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 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 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”). For example, we may ask you to complete questions in surveys about the patient’s health and health treatment history. 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. 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. 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 your information to create and manage your RARE-X 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 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.

If you give your permission, we may contact you to:

  • ask you to participate in other studies.
  • notify you about clinical trials that the Participant might be eligible for.

How We Share Participant Information with Others

We will share information you give us through the RARE-X DCP website only for the reasons we list below. Other than these reasons, we will not sell, rent, lease, give, or share your information without your permission.

We share Participant Information with other persons and organizations for the following reasons:

With researchers for research 

The RARE-X DCP aims to help researchers learn more about rare diseases and make discoveries about treating them. Participant Information we collect through the website will be stored in the RARE-X research database. With your permission, we will share Participant Information with researchers for their studies. Before we share Participant Information with researchers, we will remove the participant’s name and other information that would easily identify them. You can learn more about how we share Participant information for research in the consent forms.

 

With PAGs

With your permission, we will share Participant Information with PAGs that are associated with the patient’s rare disease so that they may:

  • contact you to help you answer questions about the Participant(s); or
  • notify you if researchers think the patient might be eligible for a clinical trial;

With your permission, we may share Participant’s data as part of an aggregate data set. Obvious identifying information (such as your name and email address) will not be included in aggregated data sets that we share with a PAG. You can learn more about how we share information with PAGs and the choices you have in the consent forms.

With the Participant’s clinicians

With your permission, a Participant’s clinician who has created an account with RARE-X DCP, may be able to access Participant Information to enter data on the Participant’s behalf and to view and access the Participant’s research records to support additional data entry and data verification.

With RARE-X service providers

We work with companies and other organizations to help us run our website and our data collection. We call these companies and organizations “service providers.” We share with service providers only Participant Information that they need to do their jobs. The service providers must sign a contract promising to use and share the information only for the job they are doing for us, to improve the service they provide to RARE-X and as required by law. Service Providers are also required to promise to use safeguards to keep Participant Information confidential.

RARE-X uses a service provider’s platform to collect, store and share Participant Information. You will be linked to this service provider’s platform at the time you create a RARE-X account. This service provider, will have access to all your information in order to perform the service(s) and functions outlined on the contracts and agreements they have with RARE-X. This service provider’s platform may have company-specific terms of use which will apply to your use of their platform in addition to the RARE-X terms of use.

For Legal Reasons

We may share Participant Information if we are required to do so by law.

RARE-X holds a Certificate of Confidentiality, which limits the disclosure of identifiable information collected for research in any Federal, State, or local civil, criminal, administrative, legislative, or other proceeding. We will comply with the Certificate of Confidentiality.

In cases where the law requires us to share Participant Information, we will try to give out as little information as possible. We will try to protect your privacy as much as we can. Whenever possible, we will tell you if we have to give out information.

Subject to the Certificate of Confidentiality, RARE-X may share Participant Information to enforce our terms and conditions or to protect our rights, privacy, safety or that of our employees, users or others.

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.

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 consent form.

You can get a copy of the Participant Information that you directly give to us. To do this, call (716) 427-2739 or email us at support@rare-x.org.

You can stop using the RARE-X DCP website https://dcp.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 +1 (716) 427-2739 or email us at support@rare-x.org. 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 (716) 427-2739 or email us at support@rare-x.org

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 THE RARE-X DCP

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

RARE-X 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 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 Non-Participants 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 We Share Non-Participant Account Information

RARE-X service providers

We work with companies and other organizations to help us run our website and our data collection. We call these companies and organizations “service providers.” We share with service providers the Non-Participant Account Information that they need to do their jobs.  The service providers must sign a contract promising to use and share the information only for the job they are doing for us, to improve the service they provide to RARE-X and as required by law. Service providers are also required to promise to use safeguards to keep the Non-Participant Account Information safe.

You will be linked to our service provider’s platform for collecting and storing data. This service provider has access to all your Non-Participant Account Information in order to perform the service(s) and functions outlined in their contracts and agreements with RARE-X. This service provider’s platform may have company-specific terms of use which will apply to your use of their platform in addition to the RARE-X terms of use.

Researcher’s Non-Participant Account Information

If you are registered as a researcher and want to access Participant Information from the RARE-X DCP for research, you may be connected to a third-party service, which helps process data access requests for research. Once you are on the research data access platform, you will be requested to provide additional information about yourself and the organization or institution with which you are associated and your research questions(s). The information that you provide in the third-party data access platform is governed by the terms of use and privacy policy of the third-party site.

RARE-X partners

In certain circumstances, we might disclose information about you and the institution or organization you are associated with to the owner of the data you are requesting, such as the Participant, to determine whether you are permitted to access the data.

For legal reasons

We may share Non-Participant Account Information:

  • As required by law
  • To enforce our terms and conditions or to protect our rights, privacy, safety or that of our employees, users or others.

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 calling (716) 427-2739 or email us at support@rare-x.org.

You can stop using the RARE-X DCP website https://dcp.rare-x.org at any time.

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 (716) 427-2739 or email us at support@rare-x.org

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 Website, below.

INFORMATION WE AUTOMATICALLY COLLECT FROM ALL USERS ABOUT YOUR WEBSITE USE

We may automatically collect technical and navigational information about your interaction with our Services such as your 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 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 your 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 your use of the RARE-X websites or Services will not contain any specific personal information about you or any other RARE-X users.

How long we keep your information

There is no limit on the length of time we will keep the information we collect automatically unless you choose to delete your information or there are limits imposed by law.

How We Protect Participant Information and Non-Participant Account Information We Collect

Protecting the confidentiality of Participant Information and Non-Participant Account 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.
  • The people who can access this information will be limited to those who need to know.
  • Other than as we described above, we will not share with others information that could directly identify you as a Participant or Non-Participant User without your 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.

People in Countries Other than the United States

Currently, the RARE-X DCP website is intended for people in the United States. If you are in another country and use this website or sign up for an account, your information will be transmitted 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. The United States or other countries to which your information may be transmitted may have different laws about protecting information than the country where you live.

Updates to This Privacy Policy

We may update this Privacy Policy. We will post updates on this website. If you visit the website, it means you agree to the updated Privacy Policy.

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 (716) 427-2739 or email us at support@rare-x.org

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