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”).
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:
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:
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 your permission, we will share Participant Information with PAGs that are associated with the patient’s rare disease so that they may:
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.
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 email@example.com.
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 firstname.lastname@example.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 email@example.com
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:
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.
Researcher’s Non-Participant Account Information
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:
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 firstname.lastname@example.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 email@example.com
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:
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.
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.
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.
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.
If you have any questions, comments or requests, please contact us at +1 (716) 427-2739 or email us at firstname.lastname@example.org
1. CHANGES TO THE SITE AND CONTENT; MODIFICATION OF THESE TERMS
RARE-X MAY MAKE CHANGES TO, AND/OR DISCONTINUE OR SUSPEND ACCESS TO THE SITE’S CONTENT AT ANY TIME WITHOUT NOTICE. YOU AGREE THAT RARE-X WILL NOT BE LIABLE TO YOU OR TO ANY THIRD PARTY FOR ANY CHANGES, SUSPENSION OR DISCONTINUANCE OF THE SITES, AND/OR CONTENT (OR ANY PART THEREOF).
2. ACCESS AND USE OF SITE AND CONTENT
Subject to your compliance with these Terms, RARE-X grants you a limited, revocable, nonexclusive right to access and use the Sites and the Content (as defined below) solely for your own internal use. In addition, if you are registered as a patient advocacy group, Rare-X may provide you with dashboard access to certain Content graphics that summarize aggregated information related to specified disease populations (“Cohort Graphics”). In such case, Rare-X grants the applicable patient advocacy group a limited, revocable, nonexclusive right to reproduce and distribute such Cohort Graphics for the purpose of engaging in advocacy work on behalf of the applicable disease population, provided that you do not modify the Cohort Graphics or remove, change or obscure any copyright, trademark, service mark or other proprietary rights notices incorporated in the Cohort Graphics.
RARE-X and its licensors retain all right, title and interest in and to the Sites, including, without limitation, any and all text, graphics, images, music, software, audio, video, works of authorship of any kind, and information or other materials that are posted, generated, provided or otherwise made available through the Site (collectively, the “Content”). All RARE-X trademarks are strictly owned by RARE-X, and nothing in these Terms will be construed to transfer ownership rights or grant any permission, license or other rights to any RARE-X trademark without written authorization from RARE-X. The names of actual companies and products mentioned within the Sites and/or Content may be the trademarks of their respective owners. RARE-X reserves all rights and licenses not expressly granted to you in these Terms and no implied license is granted by RARE-X. The Sites and its underlying technology, are protected by copyright, trademark, patent, intellectual property, and other laws of the United States and foreign countries. You agree not to remove, change or obscure any copyright, trademark, service mark or other proprietary rights notices incorporated in or accompanying the Sites and/or any Content.
3. PROHIBITED USE
As a condition of your use of the Sites and Content, you warrant to RARE-X that you will not use the Sites, the Tool and/or Content for any purpose that is unlawful or prohibited by these Terms. Specifically, You are not allowed to (directly or indirectly): (a) resell or otherwise make commercial use of the Site, the Tool and/or Content; (b) collect or use any images, descriptions, or other content included in the Site, the Tool and/or Content, or any portion thereof; (c) copy, imitate, distribute, publicly perform, or publicly display Site, the Tool and/or Content; (d) modify or otherwise make any derivative uses of the Site, the Tool and/or Content, or any portion thereof; (e) use data mining, robots or similar data gathering or extraction methods on the Site; (f) perform, or release or disclose the results of, any benchmark testing or vulnerability assessments of the Site; (g) introduce into the Site any viruses, trojan horses, malware, spyware, adware or other disruptive software, or any software code, which is designed to disrupt, damage, or perform unauthorized actions on a computer system; (h) remove or alter any proprietary notices or labels on or in the Site, the Tool and/or Content; (i) use the Site, the Tool and/or Content to directly or indirectly develop any product or service that competes with the Site; (j) download (other than page caching) any portion of the Site, the Tool and/or Content or any information contained therein, except as expressly permitted on the Site; or (k) use the Site, the Tool and/or Content other than as expressly permitted in these Terms.
You may not use the Site, the Tool and/or Content in any manner that would violate any applicable laws, rules or regulations, or, which could damage, disable, overburden, or impair the Site or interfere with any other party’s use and enjoyment of the Site, the Tool and/or Content. You may not obtain or attempt to obtain any materials or information through any means not intentionally made available or provided for through the Site, including, but not limited to, data mining, robots, or similar data gathering and extraction tools.
RARE-X shall be entitled to unrestricted use of any and all comments, suggestions, ideas, notes, drawings, concepts, problems or other information with respect to the Site, the Content or any RARE-X programs or services disclosed or offered by you to us (collectively, “Feedback”). We may use the Feedback for any and all purposes whatsoever, commercial or otherwise, without any payment or other obligation to you or any other person involved with the creation of the Feedback.
RARE-X reserves the right, in its sole discretion, to terminate and/or suspend your access to the Site, the Tool and/or Content or any portion thereof at any time, for any reason, without notice.
6. RARE-X SERVICE PROVIDERS
7. LINKS TO THIRD PARTY SITE
The Site contains links to other third party websites which are not controlled or owned by RARE-X (“Linked Site”) and who are not service providers to RARE-X. If you decide to access and use such Linked Site, be advised that your use is governed solely by the terms and conditions of such Linked Site, and RARE-X does not endorse, is not responsible for, and make no representations as to such Linked Site, their content or the manner in which they handle your data. RARE-X is not liable for any damage or loss caused or alleged to be caused by or in connection with your access or use of any such Linked Site, or your reliance on the privacy practices or other policies of such Linked Site.
8. AVAILABILITY OF THE SITE/INTERNATIONAL ACCESS
RARE-X makes no claims regarding the availability or right to access or use of the Site, the Tool and/or Content outside of the United States. RARE-X may restrict access to the Site, the Tool and/or Content, or portions thereof, in certain countries in its sole discretion, and the Site the Tool and/or Content may not be available or accessible in all languages. If you use or access the Site, the Tool and/or Content outside of the United States, you are responsible for compliance with the laws and regulations of your jurisdiction with respect to your use of the Site, the Tool and/or Content in your country of residence.
9. PRIVACY AND PERSONAL INFORMATION
THE SITES AND CONTENT (AND ANY PART THEREOF), AND ANY OTHER MATERIALS OR INFORMATION MADE AVAILABLE THROUGH THE SITES, ARE PROVIDED “AS IS” AND “AS AVAILABLE”. RARE-X AND ITS LICENSORS AND SUPPLIERS HEREBY EXPRESSLY DISCLAIM ANY REPRESENTATIONS, WARRANTIES OR GUARANTEES OF ANY KIND, EXPRESS OR IMPLIED, INCLUDING WARRANTIES OF MERCHANTABILITY, FITNESS FOR ANY PARTICULAR PURPOSE, SATISFACTORY PURPOSE, ACCURACY, OR NON-INFRINGEMENT.
RARE-X AND ITS LICENSORS AND SUPPLIERS DO NOT WARRANT OR MAKE ANY GUARANTEE THAT SITE, THE TOOL AND/OR CONTENT (OR ANY PART THEREOF), OR ANY OTHER MATERIALS OR INFORMATION MADE AVAILABLE THROUGH THE SITE: (I) WILL MEET YOUR REQUIREMENTS; (II) WILL BE COMPATIBLE WITH YOUR NETWORK, COMPUTER OR MOBILE DEVICE, OR ANY THIRD-PARTY SITE; (III) WILL BE AVAILABLE ON AN UNINTERRUPTED, TIMELY, SECURE OR ERROR-FREE BASIS; OR (IV) WILL BE ACCURATE OR RELIABLE. NO ADVICE OR INFORMATION, WHETHER ORAL OR WRITTEN, OBTAINED BY YOU FROM RARE-X OR ANY THIRD PARTY, SHALL CREATE ANY WARRANTY.
RARE-X DOES NOT WARRANT, ENDORSE, GUARANTEE OR ASSUME RESPONSIBILITY FOR ANY LINKED SITE, ADVERTISED OR ACCESSIBLE THROUGH THE SITE THE TOOL AND/OR CONTENT, AND RARE-X WILL NOT BE A PARTY TO, OR IN ANY WAY MONITOR, ANY TRANSACTION BETWEEN YOU AND THE THIRD-PARTY OPERATORS OF SUCH LINKED SITE.
IF YOU ARE DISSATISFIED WITH ANY PORTION OF THE SITE, THE TOOL AND/OR CONTENT, YOUR SOLE AND EXCLUSIVE REMEDY IS TO DISCONTINUE USING THE SITE.
11. LIMITATION OF LIABILITY
TO THE MAXIMUM EXTENT PERMITTED BY APPLICABLE LAW, IN NO EVENT SHALL RARE-X BE LIABLE FOR ANY INDIRECT, PUNITIVE, INCIDENTAL, SPECIAL, CONSEQUENTIAL DAMAGES OR ANY DAMAGES WHATSOEVER, OR FOR ANY DAMAGES FOR LOSS OF USE, DATA, OR PROFITS, ARISING OUT OF OR IN ANY WAY CONNECTED WITH THE USE OR PERFORMANCE OF THE SITE THE TOOL AND/OR CONTENT, WITH THE DELAY OR INABILITY TO USE THE SITE THE TOOL AND/OR CONTENT, OR FOR ANY INFORMATION OBTAINED THROUGH THE SITE THE TOOL AND/OR CONTENT, OR OTHERWISE ARISING OUT OF THE USE OF THE SITE THE TOOL AND/OR CONTENT, WHETHER BASED ON CONTRACT, TORT, NEGLIGENCE, STRICT LIABILITY OR OTHERWISE, EVEN IF RARE-X HAS BEEN ADVISED OF THE POSSIBILITY OF DAMAGES. IN NO EVENT SHALL RARE-X’S TOTAL CUMULATIVE LIABILITY ARISING FROM OR RELATED TO THESE TERMS OR THE ACCESS, USE OF, OR INABILITY TO ACCESS OR USE THE SITE, THE TOOL AND/OR CONTENT (OR ANY PART THEREOF), AND/OR ANY OR ANY OTHER MATERIALS OR INFORMATION MADE AVAILABLE THROUGH THE SITE, EXCEED ONE HUNDRED DOLLARS ($100.00). RARE-X DISCLAIMS ALL LIABILITY OF ANY KIND OF RARE-X’S LICENSORS AND SUPPLIERS.
12. APPLICATION OF DISCLAIMERS AND LIMITATIONS
BECAUSE SOME STATES/JURISDICTIONS DO NOT ALLOW THE DISCLAIMERS OF CERTAIN WARRANTIES AND/OR THE EXCLUSION OR LIMITATION OF LIABILITY FOR CONSEQUENTIAL, SPECIAL, INCIDENTAL OR OTHER DAMAGES, THE DISCLAIMERS AND LIMITATIONS SET FORTH IN SECTIONS 9 AND 10 MAY NOT APPLY TO YOU, INCLUDING WITH RESPECT TO BREACH OF SECTION 8. IN SUCH EVENT, THE LIABILITY OF RARE-X FOR SUCH DAMAGES WILL BE LIMITED TO THE GREATEST EXTENT PERMITTED BY APPLICABLE LAW IN SUCH JURISDICTION.
You agree that you are solely responsible for (and that RARE-X has no responsibility to you or to any third party for) any breach of your obligations under the Terms and for the consequences (including any loss or damage which RARE-X may suffer) of any such breach. Except as prohibited by law, you will hold RARE-X and its officers, directors, employees and agents harmless for any indirect, punitive, special, incidental or consequential damage, however it arises (including attorneys’ fees and all related costs and expenses of litigation and arbitration, or at trial or on appeal, if any, whether or not litigation or arbitration is instituted), whether in an action of contract, negligence or other tortious action, or arising out of or in connection with these Terms, including without limitation any claim for personal injury or property damage, arising from (i) your use of and access to the Site, the Tool and/or Content; and (ii) your violation of any of these Terms. We reserve the right to assume control of the defense of any third-party claim that is subject to indemnification by you, in which event you will cooperate with us in asserting any available defenses. This defense and indemnification obligation will survive these Terms and your use of the Services.
14. GOVERNING LAW AND DISPUTES
Governing Law. These Terms will be governed by the laws of the State of California, United States of America without giving effect to any conflict of laws principles.
Disputes. Except as otherwise set forth in these Terms, you agree that any dispute between you and RARE-X arising out of or relating to these Terms or the Site, the Tool and/or Content (or any part thereof) (collectively, “Disputes”) shall be governed by the provisions set forth in this Section.
Informal Resolution. Before resorting to formal dispute resolution in accordance with this Section, you agree to first contact us directly at [email@example.com] to seek an informal resolution to any Dispute. In the event a Dispute is not resolved within thirty (30) days after submission, you or RARE-X may institute arbitration in accordance with the procedures set forth in this Section.
Dispute Resolution. Any and all Disputes that cannot be resolved through informal resolution as set forth above shall be resolved exclusively through the state or federal courts in Los Angeles California unless otherwise mutually agreed to by the parties. Alternatively, we may agree to use the JAMS Virtual Mediation & Arbitration services to resolve disputes remotely, by telephone, online and/or be solely based on written submissions and any judgment on the award rendered by the arbitrator shall be binding, final, and confidential, and may be entered in any court of competent jurisdiction.
The Terms constitute the entire agreement between you and RARE-X, and supersedes all prior oral or written agreements or communications with regard to the subject matter described herein. Neither the rights nor the obligations arising under these Terms are assignable by you, and any such attempted assignment or transfer shall be void and without effect. The official text of these Terms (and any notice submitted hereunder) will be in English. The parties acknowledge that they require that these Terms be drawn up in the English language only. In the event of any dispute concerning the construction or meaning of these Terms, reference will be made only to these Terms as written in English and not to any translation into another language.
You agree that if RARE-X does not exercise or enforce any legal right or remedy which is contained in the Terms (or which RARE-X has the benefit of under any applicable law), this will not be taken to be a formal waiver of RARE-X’s rights and that those rights or remedies will still be available to RARE-X. No waiver by either party of any breach of any provision hereof shall be deemed a waiver of any subsequent or prior breach of the same or any other provision.
If any court of law, having the jurisdiction to decide on this matter, rules that any provision of these Terms is invalid, then that provision will be removed from the Terms without affecting the rest of the Terms, which will remain in full force and effect.
If you have any questions regarding these Terms, please send an email to [firstname.lastname@example.org].