PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). It is designed to make it faster, easier, and less costly to conduct clinical research than is now possible by harnessing the power of large amounts of health data and patient partnerships. In the process, it is transforming the culture of clinical research from one directed by researchers to one driven by the needs of patients and those who care for them.
PCORnet’s Multiple Sclerosis Patient-Powered Research Network, iConquerMS, was recently featured in a PCORI Guest Blog titled “Multiple Sclerosis Research Network Builds on Patient Input,” authored jointly by the PPRN’s Co-PIs, Laura Kolaczkowski and Robert McBurney.
PCORnet invites you to learn more about our partner network, ImproveCareNow, by watching our latest video featuring Dr. Peter Margolis, Principle Investigator for ImproveCareNow. The Network is transforming care, health and costs for all children and youth with Crohn’s disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease or IBD).
Use of Electronic Health Records, Patient Reported Outcomes, and the Common Data Model to Transform Clinical Trials
“PCORI is investing over $300 million into a clinical research network that will unite patients, clinicians, health systems, and EHRs,” says Dr. Adrian Hernandez, associate director of the Duke Clinical Research Institute. “The network itself has medical information and data on over 100 million subjects, and the patient EHRs are mapped to the PCORnet Common Data Model (CDM), which essentially organizes data into a standard structure.” ADAPTABLE will be the first pragmatic clinical trial to use the network. The trial will select patients via their EHRs, reach out to them electronically, consent them electronically, and then follow up with them electronically.