What starts as burning, numbness, pain, and/or tingling in the feet, or hands in some can turn into a debilitating condition. Peripheral Neuropathy (PN), one of the largest and most common neurodegenerative disorders, affects more than 20 million Americans of all races and ethnic backgrounds. In a groundbreaking step to learn more about PN and to find a cure for the debilitating condition, the Foundation for Peripheral Neuropathy is launching the first ever national Peripheral Neuropathy Research Registry (PNRR) focused on Diabetic, Chemotherapy-Induced, HIV/AIDS and Idiopathic neuropathies.
PN occurs when nerves can't send messages from the brain and spinal cord to the muscles, skin and other parts of the body. The symptoms can include extreme sensitivity to touch, loss of balance and coordination, sharp jabbing or electric-like pain, and a host of other life-altering symptoms. A staggering one in 15 Americans is currently living with this debilitating disorder– more than the entire population of the state of New York. As more and more people are diagnosed each year, the Foundation aims to dramatically improve the lives of people living with PN.
In order to achieve its mission, the Foundation has assembled a team of leading experts to pinpoint what is needed to find a cure. To achieve this goal, a national registry has been created to help researchers better characterize clinical phenotypes of patients with the disorder. The registry will facilitate both the basic and clinical research studies needed for an improved understanding of the etiology and pathogenesis of PN.
"Our mission in developing this registry is threefold," said Dr. Jack Kessler, FPN board member and chairman of the Department of Neurology at Northwestern University's Feinberg School of Medicine. "We set out to develop a group of well-characterized PN patients, to identify phenotypic clinical features of patients with pain, and lastly to identify biomarkers that correlate with the presence of that pain. There is no cure for PN to date, but we know that with the creation of this registry, we are much closer to finding one."
Initiated by the Foundation, the creation of the registry came to fruition through a collaboration of efforts by the Foundation's consortium members– a who's who of medical science leaders: Johns Hopkins University, Northwestern Medical Faculty Foundation, Beth Israel Deaconess Medical Center of Harvard Medical School and Mount Sinai Medical Center.
"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."
The PNRR will store and organize patient information including medical history, genetic background, medications and physical examination results. In addition, it provides a means to share information about research findings and clinical trials. The goal is to have 800 to 1,000 patients enrolled within the first year. Then, as the registry develops, the Foundation will roll out the registry throughout the U.S. and abroad, making it accessible to patients across the globe.
"A national PN registry means that researchers and physicians will have more thorough information about PN," said Pam Shlemon, president and executive director of the Foundation for Peripheral Neuropathy. "It will further empower them in the fight to diagnose, treat and prevent this disorder. The more patients that participate in the registry, the more comprehensive and diverse the data will be, and the more insight researchers and physicians will have in order to better understand this disease."
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