RareCAP Privacy Policy

At RareCAP.org, we are committed to providing a safe, secure, and valuable online experience for all our visitors and users. This Privacy Policy explains how RareCAP aims to protect and respect user privacy. RareCAP.org endeavors to adhere to the applicable privacy regulations in each country, including rules about transferring personal information to the United States. Please check this page on a regular basis for any updates to the Privacy Policy. By accessing and using our website, you agree to adhere to the terms outlined below:

1. Privacy and Data Protection:

We prioritize the privacy of our visitors and users and handle personal information with the utmost care and in accordance with applicable data protection laws. The information you share with RareCAP allows us to create an online repository of clinical protocols for the care of rare disease patients in a wide range of settings. Users can search the RareCAP database for a rare disease of interest, view and download protocols to address a specific patient need and engage with the RareCAP community by commenting on protocols and responding to other user comments.

2. Personal Information We Collect

We collect a range of Personal Information when you register to become a RareCAP User or Contributor.

The types of Personal Information we collect may include:

• Name, organization
• Contact information including email address, secondary address, city, zip code
• Log-in credentials
• For professionals only: disclosures of any relationship with industry or financial conflicts
• The information that you enter when filling out the web form to become a RareCAP User/Contributor, which includes your name, will be handled with the utmost care and in accordance with applicable data protection laws.

We collect, process, and store personal data only for the purposes explicitly stated below:

• To provide services through the RareCap application.
• For communicating with you, such as responding to your questions and comments

You may delete your profile and personal information at any time. If you delete your profile, the information tied to your contributions to the platform (i.e., comments and protocols) will be retained by the rarecap.org platform. The only exception being if you choose to delete your comments.

3. How We Collect Personal Information

• Directly from you when you register for an account
• Through online Tracking Technologies such as Pixel Tags, Web Beacons, and Trackers
  • RareCAP may collect information that tracks how visitors use this website, the date and time of a visit, the pages accessed on the site, and the web address that led them to RareCAP. These tools help us measure utilization of the RareCAP platform and improve the site.
• Device Information
  • We may use device-related information to authenticate users. For example, we may use your IP address, browser information, or other information provided by your browser or device to identify the device being used to access the RareCAP platform.

4. Information Sharing:

We will not share your personal information with third parties without your consent, except where required by law or for essential website functionality. RareCAP will not sell, lease, or rent any of your information to others.

5. Security Measures:

RareCAP is a secure, central database that stores profile/disclosure information about rare disease protocols and people (contributors) who develop and share rare disease protocols and/or comment on those protocols. All RareCAP information sent between the web server and the user’s browser will be made into a code (encrypted) using Secure Sockets Layer (SSL) protection.

6. External Links:

Our website may contain links to external websites for your convenience. We do not endorse, control, or take responsibility for the content, practices, or policies of these external sites. We encourage users to review the privacy policies and terms of use of any external websites they visit.

7. Modifications to Policy:

This privacy policy may be updated periodically to reflect changes in our practices, technologies, or legal requirements. We will post any revisions on this page, and your continued use of our website indicates your acceptance of the updated policy.

8. Contact Information:

For any questions, concerns, or inquiries regarding this privacy policy or our website, please contact us at rarecap@vumc.org.

By using our website, you agree to abide by this privacy policy and any additional terms or conditions provided on specific website sections or services.

Individual Rights:

To honor individuals’ rights in their personal information, RareCAP.org as a part of VUMC has standardized on internationally accepted privacy principles, including the following fairness principles:

• Individuals should be provided notice,
• Choice should be offered, and consent required,
• Individuals should be able to access and alter their data,
• Data should be accurate and secure, and
• Data should only be used for the purpose it is collected.

Many jurisdictions require the appointment of a Data Protection Officer (“DPO”) to monitor and provide guidance when processing “special data”. Special data includes the processing of information related to health, genetics, race, and sexuality, among other types of information. To that end, VUMC has appointed a data protection officer to monitor and provide guidance with respect to the protections for personal information in research studies. If you have any questions or complaints about how VUMC processes your personal information, please contact the Data Protection Officer at international.privacyoffice@vumc.org.

You may also contact our Article 27 representative in the EU, the UK, and Switzerland with any questions about our processing of personal information. Please send inquiries to DataRep at vumc@datarep.com.