Supporting Families. Saving Lives.
The Patient-Centered Outcomes Research Institute (PCORI) on December 17, 2013, approved $93.5 million to support an ambitious new resource known as PCORnet, the National Patient-Centered Clinical Research Network.
PCORnet will join together networks operated by both patient communities and health systems and will require patients’ and other stakeholders’ involvement in all aspects of the collection and use of the data. By enabling researchers and patients, clinicians, and other end-users of study results to interact directly and jointly determine research priorities, such as the selection of specific studies to support, PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies.
A key part of PCORnet will be Patient-Powered Research Networks (PPRNs)--patient-oriented groups united by a certain disease or condition. The successful groups receive support from PCORnet, and are charged with outreach, expanding networks of patients, and collecting standard patient data—all of which are critical for researchers looking to recruit volunteers for a clinical trial.
The SADS Foundation’s SIRCh Patient Registry is also a patient-centered database and will be a valuable resource to be utilized within the Health eHeart Alliance. Families with SADS conditions will benefit significantly from the collaboration between PCORI, Health eHeart Alliance and the SADS Foundation. http://directorsblog.nih.gov/2013/12/17/pcornet-meeting-clinical-trials-need-for-speed/
“We are so excited to be a part of Health eHeart Alliance, said Alice Lara, President and CEO of the SADS Foundation. “Led by UCSF and guided by the SADS Foundation, the AHA, Mended Hearts and StopAFib.org, and Health eHeart will facilitate innovative research to further improve the lives of those with SADS conditions.”