Last July, the Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit, nongovernmental organization authorized in 2010 by Congress as part of the Affordable Care Act, has authorized a second wave of major funding ($142.5 million) to support the ongoing development and expansion of PCORnet, the National Patient-Centered Clinical Research Network. The new funding specifically continues to support the existing 11 Clinical Data Research Networks (CDRNs), adding two more, and 16 existing Patient-Powered Research Networks (PPRNs), while launching four more.

CDRNs are composed of health systems that have partnered to conduct research using standardized electronic health record (EHR) data.

To date, approximately 70 million patients’ EHR data are represented within the CDRNs. The PPRNs are registries of patients and caregivers focused on a particular condition, type of condition, or community motivated to participate in patient-centered comparative effectiveness research.

PPRNs include rare diseases and more common conditions such as inflammatory arthritis (rheumatoid arthritis, psoriatic arthritis, juvenile idiopathic arthritis), vasculitis, pediatric systemic lupus erythematosus, juvenile dermatomyositis, inflammatory bowel disease, and multiple sclerosis, as well as communities with shared health concerns, such as PRIDEnet for lesbian, gay, bisexual, and transgender individuals.

Together these CDRNs and PPRNs make up PCORnet, a “network of networks.” PCORnet is intended to accelerate PCORI’s mission to improve the quality and relevance of clinical research to help patients, caregivers, and their health care team make better and more informed decisions about their health care options.