PNRR Peripheral Neuropathy Research Registry

In 2008 the Foundation announced the development of the PNRR which will better characterize clinical phenotypes and genotypes of patients with peripheral neuropathies and generate a cohort of well-studied patient population. Currently, limited data exist 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 is launching the first ever national Peripheral Neuropathy Research Registry (PNRR) focused on Diabetic, Chemotherapy-Induced, HIV/AIDs and Idiopathic neuropathies. 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 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.

 

In order to achieve its mission, the Foundation has assembled a team of leading experts to pinpoint what is needed to find a cure. This is an expensive investment but the greatest/significant payoff could be life-altering/transforming treatments for patients, something that patients and their families would argue is well worth the investment. Not only does this Registry require researchers who are experts in Peripheral Neuropathy, it requires patients who are willing to be active participants in research studies and clinical trials and who, by virtue of their day-to-day experience can contribute their own observations for new approaches to research.

 

“The cooperative nature of the formation of this registry is what makes it truly important,” said Dr. Ahmet Hoke, Professor of Neurology and Neuroscience at Johns Hopkins University.  “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.”

 

The consortium members of the PNRR are Beth Israel Deaconess Medical Center (Boston, MA), Mount Sinai Medical Center (New York, NY), Johns Hopkins University (Baltimore, MD), and Northwestern Medical Faculty Foundation (Chicago, IL).  This project is the centerpiece of the Foundation's efforts to-date to facilitate both basic and clinical research studies that will bring improved understandings of the origination and development of peripheral neuropathy.  The goal is to have 800 to 1,000 patients enrolled within the first year. Then, as the registry develops, a national and international adoption of the Registry will allow investigators to virtually pool their data and findings and work toward evidence-based diagnostic and treatment methodologies, preventative care, and eventually a cure for peripheral neuropathy.