In 2008, the Foundation for Peripheral Neuropathy announced the development of the Peripheral Neuropathy Research Registry (PNRR) with the goal of better characterizing biomarkers, clinical phenotypes, and genotypes of patients with peripheral neuropathies and to generate a cohort of well-studied patient population. At the time, limited data existed to define characteristics of peripheral neuropathy patients with neuropathic pain. In a groundbreaking step to learn more about PN and to find a cure for the debilitating condition, the Foundation for Peripheral Neuropathy launched the first ever national Peripheral Neuropathy Research Registry focused on Diabetic, Chemotherapy-Induced, HIV/AIDs and Idiopathic neuropathies. This Research Registry facilitates both basic and clinical research studies that will bring improved understandings of the etiology and pathogenesis of PN. Ultimately, this goal of the Registry is to improve the ability to diagnose, treat and prevent peripheral neuropathy.
The cooperative nature of the formation of this registry is what makes it truly important. With the collaboration of the consortium members, we now have a standardized method of patient examination that will greatly reduce variability in our clinical studies and research. Ultimately, the goal is that this research will result in improved diagnosis, treatments, prevention and possibly a cure for the disorder.
- Dr. Ahmet Hoke, Professor of Neurology and Neuroscience at Johns Hopkins University