Terms of Use

Acceptance of Terms

By accessing or using RareTrial at www.raretrial.org, you agree to be bound by these Terms of Use. If you do not agree, please do not use the site. These terms apply to all visitors, including patients, carers, healthcare professionals, researchers, and industry professionals.

What RareTrial Is

RareTrial is a free public information platform that aggregates publicly available data about rare diseases, clinical trials, drug development pipelines, and patient support organisations. Our goal is to make information that is technically available but practically inaccessible easy for patients and carers to find in one place.

We are not a clinical trial registry, not a medical directory, and not a healthcare provider. We do not conduct trials, prescribe treatments, or provide clinical opinions of any kind.

Medical Disclaimer

Nothing on RareTrial is medical advice. This includes, without limitation:

• Disease descriptions and clinical features
• Clinical trial listings and eligibility information
• Drug pipeline data and clinical development stages
• Approved treatment information
• Patient organisation listings and contact information
• Tips and guidance about trial participation

No information on this site should be used to make decisions about your health, your treatment, or your participation in a clinical trial without first consulting your doctor, specialist, or clinical team. RareTrial does not know your medical history, your current treatment, or your eligibility for any trial or programme.

If you are in a medical emergency, contact emergency services immediately. Do not use RareTrial in an emergency.

Drug Pipeline Information

Drug pipeline data displayed on disease pages is sourced from the Open Targets Platform (CC BY 4.0) and reflects publicly available clinical trial and regulatory records at the time of data collection. This information:

• Is a snapshot in time and may not reflect current development status
• Does not confirm that any drug is available to patients
• Does not confirm that any drug has been approved in your country
• Does not imply safety, efficacy, or suitability for any individual
• Should be verified directly with your treating physician or the drug sponsor

The display of a drug in development for a particular disease does not mean that drug will become available, receive regulatory approval, or be appropriate for any specific patient.

Patient Organisation Listings

Patient organisation information displayed on disease pages has been compiled from publicly available sources. RareTrial:

• Does not verify the current status, activity, or accuracy of any listed organisation
• Does not endorse any specific organisation, foundation, or charity
• Is not responsible for the content, services, or actions of any listed organisation
• Cannot guarantee that contact details or websites are current

Always verify organisation details directly before contacting them.

Clinical Trial Information

Clinical trial data is sourced from ClinicalTrials.gov, a public database maintained by the US National Library of Medicine. RareTrial displays this data to help patients and carers find relevant studies. Trial status, eligibility criteria, and contact information change frequently. Always verify trial details directly on ClinicalTrials.gov and with the trial team before applying.

Appearing in a RareTrial search does not mean you are eligible for any trial. Eligibility is determined by the trial team based on medical criteria that we do not assess.

Data Sources and Attribution

RareTrial uses the following public data sources, each used in accordance with its licence:

• ClinicalTrials.gov: US government public domain data
• Open Targets Platform: CC BY 4.0, Wellcome Sanger Institute / EMBL-EBI
• Orphanet / Orphadata: CC BY 4.0, INSERM / European Commission

Attribution for each data source is displayed on relevant pages throughout the site.

No Warranties

RareTrial is provided "as is" without any warranty of any kind, express or implied, including but not limited to warranties of accuracy, completeness, fitness for a particular purpose, or non-infringement. We make reasonable efforts to ensure information is accurate and up to date, but we cannot guarantee this at all times.

Limitation of Liability

To the fullest extent permitted by applicable law, Shika Group Ltd, the operators of RareTrial, shall not be liable for any direct, indirect, incidental, special, or consequential damages arising from your use of this site or reliance on any information displayed here. This includes, without limitation, any harm resulting from acting on drug pipeline information, patient organisation contact details, or clinical trial listings without independent medical advice.

Third-Party Links

RareTrial links to external websites including ClinicalTrials.gov, Open Targets, Orphanet, NORD, GARD, patient organisations, and drug sponsors. We are not responsible for the content, accuracy, or privacy practices of any external site. Links do not constitute endorsement.

Intellectual Property

The RareTrial website design, copy, and original content are owned by Shika Group Ltd and protected by copyright. Data displayed from third-party sources is used under the respective licences of those sources (see Data Sources above). You may not reproduce, redistribute, or commercialise any part of this site without prior written permission from Shika Group Ltd, except as permitted by applicable law or the relevant third-party data licence.

Governing Law

These terms are governed by the laws of England and Wales. Any disputes arising from use of RareTrial shall be subject to the exclusive jurisdiction of the courts of England and Wales.

Changes to These Terms

We may update these Terms of Use at any time. The date at the top of this page reflects the most recent revision. Continued use of RareTrial after any update constitutes acceptance of the revised terms.

Contact

Questions about these terms or data displayed on the site:

Shika Group Ltd
[email protected]