About the website
The European Platform on Rare Diseases Registration (hereinafter "EU RD Platform") provides a common place for RD registries across Europe and a central access point for information on rare disease (RD) patients’ registries for all stakeholders.
Through the European Rare Disease Registry Infrastructure (ERDRI) with its components: the European Directory of Registries (ERDRI.dor), the Central Metadata Repository (ERDRI.mdr) and the pseudonymisation service (ERDRI.spider), it makes RD patient data searchable and findable and provides EU standards for data collection and exchange.
The EU RD Platform provides corresponding training and support to existing registries and for the creation of new registries. It hosts the EU RD Data Warehouse, the ERDRI Search Broker and the Central Registries of the European network for the surveillance of congenital anomalies (EUROCAT) and the network for the surveillance of Cerebral Palsy in Europe (SCPE).
Access to, and use of, any part of the EU RD Platform any document, material or other information, including data, text, images, sound and video (hereinafter "Information") made available on the website and any of the informatics tools provided as services via the website (hereinafter "Tools") are governed by these terms and conditions of use (hereinafter "Terms and Conditions") and constitute acceptance of these Terms and Conditions by the User.
Specific terms and conditions may apply to specific parts of the EU RD Platform as indicated for those concerned parts. Where provided, specific terms shall supersede any differing provision of the Terms and Conditions in respect to those services or parts.
The European Commission reserves the right to amend these General Terms and any other specific terms on the EU RD Platform at any time by posting amended terms and conditions on the website. Such amendments will take effect on the date on which they are posted.
Information and Tools contained in the EU RD Platform may be protected by intellectual property rights. Proprietary rights, including copyright, subsisting in any of the Information available via this website are vested in their respective owners, being these the European Union, partner data-holders or any other third-party credited as such. Access to the EU RD Platform does not give the User any ownership title in the Information and Tools made available to them via the EU RD Platform. All rights not specifically granted herewith are reserved by the respective owner(s).
Right of use
Access to the EU RD Platform is granted to the User on a non-exclusive non-transferrable and royalty-free basis within the scope and objectives pursued by the EU RD Platform and in accordance with any applicable law thereto.
The User may not use the EU RD Platform in a manner which may mislead or confuse people into believing that any products and services provided by the User are in some way endorsed or certified by the European Union. Under no circumstance shall the User use the European Commission logo or otherwise spend the official name and credentials of the European Commission to imply affiliation, endorsement or other official link to European Commission unless explicitly permitted under the European Commission's visual identity policy (https://ec.europa.eu/info/resources-partners/european-commission-visual-identity_en)
Users uploading or otherwise submitting content to the EU RD Platform, grant the European Union a worldwide licence to use, host, store, reproduce, modify, create derivative works (such as those resulting from analysis, translations, adaptations or other changes), communicate, publish, publicly present, publicly display and distribute such content, within scope and duration as foreseen by applicable European Union law.
The Users update their registry data in the EU RD Platform on a regular basis (at least yearly). The Users can remove their registry from the EU RD Platform under the obligation to notify in advance the JRC at the mailbox: firstname.lastname@example.org.
Information provided by the EU RD Platform are made available to the User under the terms of the Commission's reuse policy, implemented by Commission Decision 2011/833/EU of 12 December 2011 on the reuse of Commission documents. Reuse is authorised, provided the source is acknowledged. Any modifications shall be clearly indicated. The European Commission shall not be liable for any consequence stemming from the reuse.
In addition to the above, where information generated or retrieved via the EU RD Platform is utilised by the User in a publication of scientific, technical or academic nature, the User undertakes to duly reference the EU RD Platform, in accordance with standard academic practices.
Where data or other information generated or retrieved via the EU RD Platform by the User leads to or facilitates collaborations, studies or other outputs, the User informs the JRC at the mailbox: email@example.com.
The content of the EU RD Platform is provided "as is" without warranty of any kind, either expressed or implied, including, but not limited to, completeness, accuracy, reliability, continuity, non-infringement, merchantability or fitness for a particular purpose. By contributing content to the EU RD Platform, the User remains solely responsible for the accuracy and reliability of the data and information provided.
While it strives to keep the Information and Tools timely and accurate, the European Commission makes no claims, assurances, or guarantees about the accuracy, completeness, or adequacy of the Information and Tools available via the EU RD Platform and, therefore, expressly disclaims its liability for errors and omissions to the maximum extent permitted by law.
Except where otherwise required under statutory rules or applicable provisions of law, the Information accessed via the website is of a general informational nature only. Under no circumstance shall the Information be construed as constituting professional advice.
The European Commission accepts no responsibility for any loss or damage that may arise from reliance on the Information and Tools provided via the EU RD Platform, including information or services hyperlinked from the website which are and shall remain the under the sole control and responsibility of concerned third-parties.
Should errors or omissions concerning the Information and Tools provided via this website be brought to its attention, the European Commission will promptly endeavour to correct them directly or, where necessary, refer the matter to the concerned partner data-holder or third-party.
Data processing and protection
Information hosted on this website is treated according to the principles governing the protection of personal data in the European Union Regulation (EU) 2018/1725. For more information please check our Privacy Statement DPO-2176 and Privacy Statement DPO-1924.