The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium is part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). CReATe is funded under grant number U54NS092091 as a collaboration between NCATS and the National Institute of Neurological Disorders and Stroke (NINDS).
This website is hosted by the network’s Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, which is funded by NCATS and NINDS under grant number TR002818.
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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.
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