RARE-X DATA COLLECTION WEBSITE PRIVACY POLICY

The RARE-X Data Collection Program (RARE-X DCP) website is a tool to help collect, store, and share information about patients with rare diseases for research. RARE-X is committed to protecting your privacy. This Privacy 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 website. Most of the information that RARE-X will collect through this website comes from patients, their caregivers, family members or other legally authorized representatives (collectively called “caregivers”). In addition, RARE-X may collect a minimum amount of information from researchers and clinicians.

By visiting the RARE-X DCP website, you agree to this Privacy Policy

How We Use and Share Your Information

This section describes how we use and share information that patients and their caregivers or researchers give us. There is a separate section for Patients and Caregivers and another section for Researchers because these two groups give us different information. There is also a section about data that is collected automatically in site navigation.

Patients and Caregivers

Patient Pre-Registration Information

Although we would like as many people as possible to participate in the RARE-X DCP, there are some requirements on who can participate. We will ask you a few questions, such as the patient’s age and where they live to help us figure out if the patient meets the requirements for joining this Program.

If the patient does not meet the requirements for this Program, you will not be able to register for an account, and we will delete the pre-registration information you provided.

If the patient meets the requirements for this Program, we will transfer this basic information that you provided to the account you create.

Patient and Caregiver Registration Information

To register for the RARE-X DCP, you will create an account. When you create an account, you will give us your username, password, and email address.

Other Information We Collect about Patients and Caregivers

After you have created an account, we will ask for detailed information about the patient(“patient information”). For example, we may ask the patient’s name and 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. We may have other ways for you to give information about the patient to us through the RARE-X DCP website, such as uploading test results or other records.

How We Use Patient and Caregiver Information

We may use your email address to contact you. Some examples of why we might contact you are to give you technical support or to tell you what’s new with RARE-X DCP. We may use your registration information and patient information to assist you in filling out surveys about the patient and their caregivers.

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

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

How We Share Patient and Caregiver 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 patient and caregiver information with other persons and organizations for the following reasons:

For research

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

For patient organizations to contact you

With your permission, we will share patient and caregiver information with patient organizations that are associated with the patient’s rare disease so that they may contact you to:

help you answer questions about the patient and their caregivers;
notify you if researchers think the patient might be eligible for a clinical trial.

You can learn more about how we share information with patient organizations in the consent forms.

With 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 the registration and patient information that they need to do their jobs. The service providers will have to sign a contract promising to use the information only for the job they are doing for us. Also, they will promise to keep the information safe.

For legal reasons

We may share information if we are required to by law. Otherwise, we will not share information for any civil, criminal, administrative, legislative, or other proceedings.

In cases where the law says we must share 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.

Patient and Caregiver Rights and Choices

Patients and caregivers have rights and choices about how we use and share their information. You can choose the amount of information that you share with us. You can choose who we can share the patient’s information with for research. These choices are described in more detail in the consent form.

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

You can stop using the RARE-X DCP website https://rare-x.org at any time. Please note that if you just stop using the website or delete your web account, it does not mean that you have quit taking part in the RARE-X DCP.

If you want to quit the Program so that researchers can no longer use your information you can call us +1 (716) 427-2739 or email us at privacy@rare-x.org . If you quit, you can ask us to delete your information from our digital storage. We will delete your information. But we can’t take it back from researchers 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 information we collect from you for a short time, even after asking 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 privacy@rare-x.org.

For information about how we use cookies and other ways of automatically collecting information, please read Information We Collect from All Website Users below.

Researchers

Researcher Registration Information

Researchers may create an account to participate in the RARE-X DCP on our website. When you create an account as a researcher, you will provide us with your username, password, and email address.

How We Use Researcher Registration Information

We may use your email address to contact you. Some examples of why we might contact you are to give you technical support or to tell you what’s new with the RARE-X DCP.

How We Share Researcher Registration Information

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 registration information that they need to do their jobs. The service providers will have to sign a contract promising to use the information only for the job they are doing for us. Also, they will promise to keep the information safe.

To participate in the RARE-X DCP as a researcher, you will click on a link and be directed to DUOS, a third-party service provided by the Broad Institute, which helps process data access requests. Once you are on the DUOS platform, you will be requested to provide additional information about yourself and the institution with which you are associated. The information that you provide in the DUOS platform is governed by the Broad’s Privacy Policy.

RARE-X partners

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

For legal reasons

We may share information if we are required to by law. Otherwise, we will not share information for any civil, criminal, administrative, legislative, or other proceedings.

For information about how we use cookies and other ways of automatically collecting information, please read Information We Collect from All Website Users below.

Information We Automatically Collect About How You Use the Website

When you visit the RARE-X DCP website, we automatically collect information about the way you use the website. Here is a list of the information we collect:

The date and time of your visit to the RARE-X DCP website.
The pages you visit on the RARE-X DCP website.
The time you spend on each page.
Your actions on each page. For example, when you click a button on the page.
The type of device you use to visit our website. For example, whether you are using a tablet or mobile phone.
Your device’s IP (internet protocol) address. An IP address is a string of numbers that identifies a device on the internet. It does not identify the person using the device.
Your device’s operating system. For example, whether you use the Windows operating system or the Apple computer operating system iOS.
The browser you use to visit the RARE-X DCP website.

We will use this information we collect about how you use the RARE-X DCP website:

To make sure the website works the way it is supposed to.
To improve the website.
To improve the way we collect information.
To make the website easier to use. For example, we will keep information you have entered so it does not need to be re-entered.

We use tags, beacons, and cookies to keep an eye on the RARE-X DCP website traffic. These web tools tell us things like how people get to our website and if they have visited before.

We also ask web service providers, like the Google Analytics platform, to tell us about RARE-X website traffic.

If you do not want us to track your use of the RARE-X DCP website, you can use ad blockers and/or Do Not Track preferences in your browser.

We do not link the information collected about your use of the RARE-X DCP website with your name or other easily identifiable information.

How Long We Keep Your Information

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

How We Protect the Information We Collect

Protecting the confidentiality of your and/or the patient’s 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 will take to ensure the information we collect is private and secure.

Information we have collected will be stored on protected computers.
We will limit and track who can see this information.
We will limit who is allowed to see information that could directly identify you or the patient, like your names.
We will not share with others information that could directly identify you or the patient 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, you understand that your information will be transmitted and stored on servers in the United States. You understand that the United States 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 privacy@rare-x.org.