Research Registry

research_registryIn 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,” 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.”

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.

Goals

  • Generate a cohort of well-studied patients
  • Stored biological samples collected throughout the course of PNRR in a central repository that will be accessible to any scientist with promising biomarker leads for the purposes of verifying initial results and assessing correlations to clinical outcomes and other biomarkers
  • Identify phenotypic clinical features of patients with neuropathic pain
  • Improve and/or assist with clinical trial recruitment process
  • Develop a comprehensive and uniformly acquired clinical dataset with correlated biological samples that can be used in biomarker verification studies
  • Establish standardized protocols for acquisition, transfer and analysis of clinical data and biological samples that can be used by the research community
  • Identify biomarkers correlated with the presence of peripheral neuropathic pain
  • Create standardized data protocols to ensure that tests and assessments conducted at multiple sites and across multiple cohorts can be pooled as shared in the clinical community
  • Establish a comprehensive set of clinical biospecimens data that will be used to define biomarkers of PN. Once these biomarkers are defined, they can be used in therapeutic studies, which is the ultimate goal

Outcomes

  • Understand the disease
  • Improve diagnosis of PN
  • Develop new therapies
  • Find a cure

Biospecimens

Data and biospecimens and data are provided at a cost to researchers, so talented scientists can devote their efforts to their novel research instead of the laborious process of sample collection. The Registry is an open-access resource, meaning that samples and data are available to all researchers regardless of institution or location provided they meet the criteria set forth in the application and agreements.

The data collected in the PNRR will ultimately result in the improvement of the ability to diagnose, treat, prevent and eventually, cure peripheral neuropathy.

Want to participate in PNRR?

Patients often ask how they can participate in the PNRR. Here are some of the most frequently asked questions. For more information, please review the PNRR Brochure.

How can I enroll in the Foundation’s PNRR?

There are five (5) 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), and University of Utah (Salt Lake City). 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.

How many times must I be seen at the consortium site?

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.

How confidential is the database?

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

Will my insurance cover my participation in the registry?

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.

How do I contact a consortium site to make an appointment?

To make an appointment to enroll in the registry, please contact your preferred consortium site:

  • Johns Hopkins, Baltimore: (410) 614-4188
  • Kansas University, 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

Current Status

Statistical data on the study population collected to date in the PNRR
Learn more

Consortium Partners

Network of leading neurological clinics anc collection siteswho work with each other and FPN to build the PNRR.
Learn more