RareTrial

Legal

Privacy Policy

Last updated: June 2026

RareTrial ("we", "us", or "our") operates the website www.raretrial.org. This Privacy Policy explains how we collect, use, and protect information when you visit our site. By using RareTrial, you agree to the terms set out here.

What We Collect

Automatically Collected Data

When you visit RareTrial, our analytics tools and advertising partners automatically collect certain non-personally identifiable information, including:

  • Pages visited and disease pages viewed
  • Browser type and operating system
  • Approximate geographic location (country/city level)
  • Referring website or search query
  • Time spent on pages and scroll depth
  • Clicks on outbound links (e.g. ClinicalTrials.gov, advocacy organisations)

Information You Provide

RareTrial does not require you to create an account to browse the site. We collect personal information in two circumstances: if you subscribe to trial alerts, or if you contact us directly by email.

Trial Alert Subscriptions

If you subscribe to trial alerts on RareTrial, we collect your email address and the name of the disease you are monitoring. Because a disease name may reveal or imply a health condition, this combination is treated as health-adjacent data under GDPR Article 9.

Legal basis: Explicit consent, given at the point of subscription. You can withdraw consent at any time by unsubscribing (see below).

Where it is stored: Subscription data is stored in a private Google Sheet managed via Google Apps Script, hosted on Google infrastructure. Google's servers may be located in the US or EU. No third-party marketing platform receives this data.

How long we keep it: Your email and disease preference are retained for as long as you remain subscribed, or for a maximum of 24 months from your last confirmed subscription, whichever comes first. After that period, data is deleted from the sheet.

To unsubscribe: Email [email protected] with the subject line "Unsubscribe" and we will remove your data within 5 business days. You will receive a confirmation once deleted.

Cookies

We use cookies (small text files stored on your device) to understand how visitors use RareTrial and to serve relevant advertising. Cookies do not contain personally identifiable information.

Analytics Cookies

We use Google Analytics 4 (GA4) to measure site traffic and user behaviour in aggregate. GA4 sets cookies to track sessions and page views anonymously. You can opt out of Google Analytics tracking by installing the Google Analytics Opt-out Browser Add-on.

Advertising Cookies

We display advertisements on RareTrial served by Google AdSense and other third-party advertising networks. These networks may use cookies to serve ads based on your prior visits to this site or other websites. Google's use of advertising cookies enables it and its partners to serve ads to you based on your visit to RareTrial and other sites on the internet.

Google uses the DART cookie to serve ads to visitors based on their browsing activity. You may opt out of the use of the DART cookie by visiting Google's Ads Settings.

Third-Party Advertising Opt-Out

You can opt out of personalised advertising from third-party vendors by visiting:

You can also manage cookie preferences directly in your browser settings.

How We Use Your Information

We use the data we collect to:

  • Understand which disease pages and content are most useful to visitors
  • Improve site performance, navigation, and search functionality
  • Display relevant advertising to support free access to the platform
  • Comply with applicable laws and regulations

We do not sell your personal data to any third party. Trial alert subscribers' email addresses and disease preferences are used solely to send relevant trial notifications and are never shared with advertisers, pharmaceutical companies, or any other third party.

Data Sources

RareTrial aggregates publicly available rare disease information from the following sources. Each is used in accordance with its licence terms.

  • ClinicalTrials.gov: Clinical trial data from this US government public database (public domain). Displayed under fair use for public benefit.
  • Open Targets Platform: Drug pipeline and clinical development data, licensed under CC BY 4.0. Attribution displayed on all relevant pages.
  • Orphanet / Orphadata: Rare disease classifications, ORPHA codes, and gene associations, licensed under CC BY 4.0. Attribution displayed throughout the site.
  • NORD (National Organization for Rare Disorders): Linked as an external resource. RareTrial is not affiliated with NORD.
  • GARD (NIH Genetic and Rare Diseases Information Center): Linked as an external resource. RareTrial is not affiliated with NIH or GARD.

Patient organisation information displayed on disease pages has been compiled from publicly available sources. RareTrial does not verify the current status, accuracy, or activity of any listed organisation and does not endorse any specific organisation. Links to third-party organisations are provided for informational purposes only.

Third-Party Services

RareTrial integrates with the following third-party services, each governed by their own privacy policies:

Medical Disclaimer

RareTrial is an information service, not a medical service. Everything on this site, including disease descriptions, clinical trial listings, drug pipeline information, approved treatment data, and patient organisation links, is provided for general informational and educational purposes only.

Nothing on RareTrial constitutes medical advice, diagnosis, or a treatment recommendation. Drug pipeline data reflects publicly available research records and does not imply that any drug is safe, effective, or appropriate for any individual patient. Approved treatment status reflects regulatory data at time of publication and may not be current.

Always consult a qualified healthcare professional (your doctor, specialist, or clinical team) before making any medical decision, including decisions about clinical trial participation, treatment options, or contact with drug sponsors.

RareTrial is not affiliated with ClinicalTrials.gov, the US National Institutes of Health, Orphanet, Open Targets, NORD, GARD, or any pharmaceutical company, drug sponsor, or patient organisation listed on this site.

Data Accuracy

We make reasonable efforts to keep information accurate and up to date, but we cannot guarantee the completeness or currency of any data displayed. Clinical trial status, drug pipeline stages, regulatory approvals, and patient organisation details change frequently. Always verify information directly with the source before acting on it.

Children's Privacy

RareTrial is not directed at children under the age of 13. We do not knowingly collect personal information from children. If you believe a child has provided personal information to us, please contact us and we will delete it promptly.

Data Retention

Analytics data is retained for 14 months by default in Google Analytics 4, after which it is automatically deleted.

Trial alert subscription data (email address and disease name) is retained until you unsubscribe, or for a maximum of 24 months of inactivity, whichever comes first. To request early deletion, email [email protected].

Your Rights

Depending on your location, you may have rights to access, correct, or delete personal data we hold about you. To exercise any of these rights, please contact us at the address below. We will respond within 30 days.

If you are in the European Economic Area or United Kingdom, you have additional rights under GDPR and UK GDPR, including the right to lodge a complaint with your local data protection authority.

Changes to This Policy

We may update this Privacy Policy from time to time. The date at the top of this page reflects when the policy was last revised. Continued use of RareTrial after any changes constitutes acceptance of the updated policy.

Contact Us

If you have any questions about this Privacy Policy or how your data is handled, please contact:

Shika Group Ltd
[email protected]