In January 2019, a study was published by the Journal of the Peripheral Nervous System on the design and characteristics of patient data collected from the Peripheral Neuropathy Research Registry (PNRR). This is the first ever overall study performed on this Patient Registry and one that truly highlights the importance of this dataset for current and future research in the field of peripheral neuropathy.
In this study, the design, types of data collected, characteristics and ongoing analysis on the dataset are discussed. A brief summary of the findings about this Patient Registry is as follows:
- Of the 1,150 patients included in this data review, idiopathic PN patients formed the largest group, accounting for 52% of the participants. Diabetes was the cause for 31% of the patients, 10% had HIV/AIDS, and 7% of the participants had Chemotherapy-Induced PN. (Idiopathic PN refers to patients for whom the cause of PN is not known or identified.)
- Eighty percent of participants were between 50 and 80 years old, and 5% were under the age of 40.
- About 60% of the participants in the study were male; 40% were female.
- The majority of the patients were Caucasian/white (83%), while only 10% were African American/black.
- Numbness was the most common symptom, reported by 85% of all enrolled patients, followed by autonomic symptoms (80%), pain (70%), balance issues (66%), and muscular weakness (56%).
- For the entire cohort, 62% reported sleeping difficulties. Sleep disturbance was more common among those with Diabetic PN and Chemo-induced PN compared to idiopathic PN and HIV-PN.
- Painful symptoms were reported by 70% of the idiopathic PN and CIPN patients, 66% in the HIV-PN, and by 77% in the DPN group. The most common areas of pain were reported in the feet (93%), then legs (53%), hands (35%), and arms (15%). In reference to the Numeric Rating Scale, the median pain rankings were reported at 6 or 7, with a peak at pain levels 7 or 8.
- The most common abnormal testing results was glucose. The median HgbA1c in the DPN group was 6.3 compared to 5.6 in the three other categories. Other abnormal testing results included various protein levels.
This initial study utilizing the patient samples from the PNRR highlights the utility of this biobank as a clinical research tool for future studies. As more patients continue to enroll in the PNRR, the Foundation for Peripheral Neuropathy is optimistic that more researchers will express interest in utilizing this unique data set for their scientific discoveries in the field, yielding more answers for clinicians and patients alike.
What is the Peripheral Neuropathy Research Registry (PNRR)
In 2008, the Foundation for Peripheral Neuropathy launched the first and only patient registry dedicated to peripheral neuropathy (PN) – the Peripheral Neuropathy Research Registry (PNRR). This biobank of patient samples will better characterize clinical phenotypes and genotypes of patients with peripheral neuropathies and generate a cohort of well-studied patient populations, which is expected to improve understandings of the etiology and pathogenesis of PN. Ultimately, the major goal of the PNRR is to improve the ability to diagnose, treat and prevent peripheral neuropathy.
The PNRR is a multi-center collaboration initiated and funded by Foundation for Peripheral Neuropathy. As of February 2019, more than 1,650 biological samples, nerve and exam work-ups, and patient histories have been collected from people with diabetic, chemotherapy-induced, HIV/AIDS and (especially) idiopathic neuropathies from across the United States. Enrollment into the PNRR is ongoing and eventually will contain extensive information on more than 2,000 patients.
This cohort of patients, comprising of different sexes, ethnicities, ages and social and economic backgrounds, will advance research through the development of biomarkers and the identification of previously unknown cases of PN, finding disease-altering treatments and better symptom relief for patients.
Why Do Patient Registries Matter?
Data from patient registries help advance research and improve care. They are also invaluable for tracking what happens when a new drug or medical device comes on the market. They gather information by following people over time, and they aggregate data, which can reveal significant patterns or trends. The hope for all patient registries is to connect the dots between genetic causation, presentation in bodily tissues, and clinical progression of the disease. This might lead to biomarkers, which would be a huge advance in diagnosis – and the sooner you get treatment, the better quality of life.
Additional information can be found at www.foundationforpn.org/research/research-registry.
Donors to FPN help support the growth and success of the Research Registry, potentially leading to better treatments and cures. Please consider making a gift today.