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Are there any PCORnet projects dedicated to rare diseases?

The goal of PCORnet is to establish an infrastructure to conduct CER.

Among the 33 partner networks, 9 of the Patient-Powered Research Networks (PPRNs), which are operated and governed by groups of patients and their partners, focus on one or more rare disease. Additionally, 12 Clinical Data Research Networks (CDRNs), which are operated and governed by health systems, have rare disease cohorts.

If you are interested in learning more about how you can partner with or use data collected through PCORnet for your study visit http://www.pcornet.org/about-pcornet/.

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