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Website Policies

The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Division of Rare Diseases Research Innovation (DRDRI). The RDCRN websites are hosted by the network’s Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, which is funded by NCATS and the National Institute of Neurological Disorders and Stroke (NINDS) under grant number TR002818.


The Rare Diseases Clinical Research Network (RDCRN) strives to ensure that the information available on its web site is accessible to everyone, pursuant to Section 508 of the Rehabilitation Act. If you use special adaptive equipment to access the web and you encounter problems when using this site, please contact us by email. You may wish to request information in an alternative format. Please provide specific details when describing the information you seek. To learn more about the regulations governing the accessibility of Federal electronic information products, visit the Section 508 page of the General Services Administration's website.

Copyright Status

Most of the information at this site is in the public domain. Unless stated otherwise, documents and files on RDCRN web servers can be freely downloaded and reproduced. The NIH sponsors most documents on this server; however, you may encounter documents sponsored along with private companies and other organizations. Other parties may retain all rights to publish or reproduce these documents or to allow others to do so. Some documents available from this server may be protected under the U.S. and foreign copyright laws. Permission to reproduce these documents may be required.

Disclaimer of Endorsement

NIH does not endorse or recommend any commercial products, processes, or services. The views expressed in written materials or publications do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.

External Links

This site may provide links to other Internet sites only for the convenience of World Wide Web users. RDCRN and NIH are not responsible for the availability or content of these external sites, nor does NIH endorse, warrant or guarantee the products, services or information described or offered at these other Internet sites.

Inbound Links

Use the following guidelines when setting up a link to the Rare Diseases Clinical Research Network website:

  1. Please note that permission to link to our site does not imply endorsement.
  2. We do not allow framing of our website(s). Links to our web pages should open in a new Web browser window.
  3. Links should be text only and you may not display the Rare Diseases Clinical Research Network logo on your site or use it as a link.
  4. Please note that it is your responsibility to ensure that links are active. We will take no responsibility for that check.

Disclaimer of Liability

For documents available from this server, the U.S. Government does not warrant or assume any legal liability or responsibility for the accuracy, completeness, or usefulness of any information, apparatus, product, or process disclosed.

Privacy Policy and EU General Data Privacy Notice

This notice applies to the NIH-designated RDCRN Data Management and Coordination Center (DMCC) and is intended to comply with the European Union’s (“EU”) General Data Protection Regulation (“GDPR”). This Privacy Notice applies to personal data that was collected from individuals while they were located in the EU, and is now stored and/or processed by RDCRN. “Personal Data” as used here means any information relating to an identified or identifiable RDCRN research subject or website user as defined in Regulation (EU) 2016/679 (General Data Protection Regulation found here).

The RDCRN collects and processes data relating to rare diseases for the purposes of advancing medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment, and data sharing. Data collected may include personal demographic information, medical information, and contact information (including study data as well as any personal data voluntarily given to RDCRN). Data may be aggregated and/or shared with other members of the RDCRN but only that for which consent was initially obtained. While data may be retained for the duration of the research, as well as in perpetuity in collection(s) within the RDCRN network, no processing beyond what was consented shall be performed.

RDCRN recognizes the right to erasure (the “right to be forgotten”) as defined in GDPR. Anyone with questions or concerns about their personal data should contact to request a review of their data, or to request a withdrawal of consent. Please note that under this requirement, RDCRN may evaluate the request for applicability. You may contact the data supervisory authority in your country if you have a complaint about the processing of your personal data.

Cookie Policy

The RDCRN website utilizes cookies (small data files that many websites utilize to enable the site to deliver personalized services or to provide persistent authentication) to enable site experience features and to analyze site utilization. This information is used to facilitate user interaction with the site and provide usage and performance statistics. RDCRN website cookies do not track the usage patterns or collect personal information of website users.