For Patients

For Patients

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.

“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
Johns Hopkins University

Want to participate in the PNRR?

Patients often ask how they can participate in the PNRR. The Registry is a standardized collection of data and DNA samples on individuals diag- nosed with Diabetic Peripheral Neuropathy (DPN), Chemotherapy-Induced Peripheral Neuropathy (CIPN), Idiopathic Neuropathy and HIV/AIDS associated neuropathy.

Are you a researcher?

Researchers interested in accessing our biospecimens
If you have any questions about this form or would like to discuss your project in further detail prior to submitting this application, please contact us

There are six (6) consortium sites for the PNRR: Johns Hopkins University (Baltimore), Kansas University Medical Center (Kansas), Mount Sinai Medical Center (New York), Northwestern Medical Faculty Foundation (Chicago), University of Utah (Salt Lake City), and Washington University School of Medicine (St. Louis). 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.

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There are 2,046 subjects as of March 2021

Data collection in the Peripheral Neuropathy Research Registry (PNRR) began in January 2021. 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– March 2021.

Diabetes

0

Samples

Idiopathic

0

Samples

HIV / AIDS

0

Samples

Chemo Induced

0

Samples

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