Peripheral Neuropathy Research Registry

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.

“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 Höke
Professor of Neurology and Neuroscience
Johns Hopkins University

Why PN patients should participate in the PNRR

Patients often ask why they should participate in the PNRR. 

The Registry is a set of patient data and patient samples intended for research use. These samples and data are from patients diagnosed with Diabetic Peripheral Neuropathy (DPN), Chemotherapy-Induced Peripheral Neuropathy (CIPN), Idiopathic Neuropathy and HIV/AIDS associated neuropathy. 

The intent is for new research projects to be developed in order to learn more about the characteristics of painful versus non-painful neuropathies. With new research, there is always new opportunity for advancements in treatment and prevention strategies.

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.

Each participant must been seen by a neurologist in the PNRR at least once. You will be asked to sign a consent form, complete a full medical history questionnaire including social, occupational, and family data, and have a complete physical. You will also be asked to provide a blood sample.

The registry has state-of-the art security systems with many safeguards in place to maintain patient confidentiality.

Most insurance companies will cover your expenses, but it depends on the coverage you have with your medical provider. Prior to scheduling an appointment at a registry facility, you should contact your provider and check your benefits.

To make an appointment to enroll in the registry, please contact your preferred 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) 362-3752
University of Michigan, Ann Arbor: (734) 936-9010

There are 2,170 subjects as of September 2021

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 – September 2021.

Diabetes

0

Samples

Idiopathic

0

Samples

HIV / AIDS

0

Samples

Chemo Induced

0

Samples

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