Peripheral Neuropathy Research Registry – Researchers
About the PNRR
In 2008, the Foundation announced the development of the Peripheral Neuropathy Research Registry (PNRR) which will better characterize clinical phenotypes and genotypes of patients with peripheral neuropathies (PN) 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 has launched 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 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.
Interested in Accessing our Biospecimens?
There are seven (7) consortium sites for the PNRR: Johns Hopkins University (Baltimore), University of Kansas Medical Center (Kansas City), Mount Sinai Medical Center (New York), Northwestern Medical Faculty Foundation (Chicago), University of Utah (Salt Lake City), Washington University School of Medicine (St. Louis) and University of Michigan (Ann Arbor). To enroll in the PNRR you must meet the inclusion criteria: at least 18 years of age; diagnosed with Diabetic Peripheral Neuropathy, Chemotherapy-Induced Neuropathy, HIV/AIDS related Neuropathy, or Idiopathic Neuropathy; be seen at one of the consortium sites.
The registry has state-of-the art security systems with many safeguards in place to maintain patient confidentiality.
Below is the contact information of each registered consortium site:
Johns Hopkins, Baltimore: (410) 614-4188
University of Kansas, Kansas City: (913) 945-9932
Mount Sinai, New York: (212) 241-0784
Northwestern, Chicago: (312) 695-7950
University of Utah, Salt Lake City: (801) 585-2741
Washington University, St. Louis: (314) 362-6981
University of Michigan, Ann Arbor: (734) 936-9010
There are 2,366 subjects as of December 2022
Data collection in the Peripheral Neuropathy Research Registry (PNRR) began in January 2012. Patients enrolled in the Foundation for Peripheral Neuropathy’s Registry are subjects with Diabetic Peripheral Neuropathy (DPN), Chemo-induced Peripheral Neuropathy (CIPN), Idiopathic Peripheral Neuropathy (unknown cause) and HIV/AIDS Peripheral Neuropathy.
The chart below provides a statistical overview on the types of patients enrolled in the PNRR from the period of
January 2012 – December 2022.
HIV / AIDS