With the support of two significant grants, the Foundation for Peripheral Neuropathy is continuing to enroll new patients into our one-of-a-kind, Peripheral Neuropathy Research Registry (PNRR). Our goal is to enroll 280 patients this year with an ultimate goal of 2000 enrolled patients. The data in the PNRR aims to help researchers access detailed genotypic and phenotypic history and neurological examination information about people with painful and non-painful peripheral neuropathies. This Research Registry will facilitate both basic and clinical research studies that are expected to improve understandings of the etiology and pathogenesis of PN. Ultimately, the major goal of the Registry is to improve the ability to diagnose, treat and prevent peripheral neuropathy.
Bristol-Meyers Squibb will soon be publishing their research findings, NaV Channel Variants in Patients with Painful and Non-Painful Peripheral Neuropathy, based on data from the registry in the Neurology Journal. The Research Coordinator at Johns Hopkins University has written a white paper analyzing the content of the registry data which will be presented at the annual meeting of the Peripheral Nerve Society (PNS) this summer. The interests of PNS members encompass all aspects of the peripheral nervous system, both clinical and scientific, and range from electrophysiologic tools for diagnosis to molecular mechanisms of disease and nerve fiber regeneration. These are important opportunities to showcase the PNRR that we hope will promote greater interest in peripheral neuropathy research.
4 thoughts on “Peripheral Neuropathy Research Registry Update”
Are you registering people with inherited PN?
At this time the registry does NOT include inherited neuropathies. Thank you for your inquiry.
As a participant in the registry, I encourage all PN patients to join the registry. A registry with 2,000 participants can help to advance knowledge of the causes and potential cures for this disease.
Thank you, Richard!