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Qualitative Neuropathy Clinical Research Study in ChicagoIf you are at least 18 years old, live in the Chicago area, and currently are experiencing neuropathy (numbness, tingling, and/or pain) in your fingers or toes, you may be eligible to participate in a study to investigate the impact of neuropathy on people’s quality of life. The study will help doctors and nurses monitor neuropathy and could help to improve the quality of patient care. The study involves completing an in-person, tape-recorded interview and surveys consisting of questions about your quality of life and your experience with neuropathy. The interview and surveys will take approximately 45 – 60 minutes. This is a research study and does not involve treatment or therapy. Participants will be paid $50.00 upon completion of the interview. The interviewer will work with you to schedule the interview at a time and place in the Chicago area that is most convenient for you. The study is being conducted by the Center on Outcomes, Research, and Education (CORE) at Evanston Northwestern Hospital, along with the Cancer Wellness Center in Northbrook, IL. Founded in 1989, the Cancer Wellness Center provides comprehensive support services, education, stress reduction strategies and a 24-hour emotional support hot line to people living with cancer. The nonprofit Center, which offers programs free of charge to cancer survivors and their families, is staffed by clinical professionals. It is funded through private philanthropy and relies heavily on the assistance of volunteers. For more information, click on this link to download the Qualitative Neuropathy Information Flyer (pdf) If you are interested in participating, please contact: Artist Raises Money for Miller Center Research
Jim and his daughter, Caryn, attended the Jack Miller Center’s June patient seminar in Highland Park. After hearing about the Center’s research initiatives, Jim decided to donate all the proceeds from the sale of his artwork at the annual Glenview Street Fair to support research at the Jack Miller Center. Jim also wanted to help build awareness of peripheral neuropathy, so asked the Miller Center for brochures to distribute at the Street Fair and designed a poster, What is Peripheral Neuropathy and Why Should You Care About It?, that was displayed next to his booth. According to Jim, many people stopped to ask questions and take a brochure. What's more, he reports that sales at his booth this year were the best ever. We were thrilled to learn about Jim’s creative way to support the Jack Miller Center and grateful for his very generous donation. If you would like to help spread the word about the Jack Miller Center, please let us know. THANK YOU JIM! Large Turnout for June Patient Education SeminarMore than 150 patients, family members and caregivers filled the seats at Lakeside Congregation in Highland Park, IL on June 7, 2006 for PERIPHERAL NEUROPATHY: THE HIDDEN DISEASE, Current Research and Treatment Updates, a freeeducational seminar sponsored by the Jack Miller Center for Peripheral Neuropathy. Dr. Brian Popko, Director of the Jack Miller Center for Peripheral Neuropathy at the University of Chicago, described the research being done in his laboratory and explained how it may help determine the causes – and potential cures – of various forms of peripheral neuropathy. Mr. Jack Miller, founder of the Jack Miller Center, related his personal experience with peripheral neuropathy and how his search for a cure led to the establishment of the Jack Miller Center. Mr. Miller emphasized how important it is for everyone suffering from this debilitating disease to support the type of scientific research being done by Dr. Popko. A lively and informative question and answer session followed the presentations which audience members described as well-balanced, comprehensive, nicely paced, and easy to understand. 2006 Symposium Update & Photos
We Have A New Logo!The Jack Miller Center for Peripheral Neuropathy welcomes a new logo and a new visual identity. The rollout will take place over time as begin using our new logo on our stationery, website and publications. Look for our new logo on our materials in the near future!
Exercise and Diet Can Help Regenerate NervesA recent study sponsored by the National Institutes of Health (NIH) found that patients with pre-diabetes or borderline diabetes (also called impaired glucose tolerance or IGT) can reduce neuropathic pain and help regenerate damaged nerve fibers through a combination of diet and exercise. In pre-diabetes, the body has higher than normal blood sugar levels, but not high enough to be diagnosed as diabetes. If left untreated, people with pre-diabetes are at risk of developing type 2 diabetes, heart disease, and diabetic neuropathy. For patients with true diabetes, prior research suggests that currently available treatments will not improve damage caused by diabetic neuropathy. However, a research team from the University of Utah has shown that lifestyle changes may reverse nerve damage for people in the earliest stage of pre-diabetes – a condition that affects 10% to 20% of the American population. In the NIH study, 32 patients with pre-diabetes were given a weight loss goal of 7%, along with instructions to complete 150 minutes of moderate exercise each week. They also received personalized counseling from a nutritionist every 3 months. After one year, small skin biopsies showed that the number of nerve fibers increased approximately 33%, although patients with the greatest nerve damage did not show improvement. In general, the patients in the study experienced less pain. This study has important implications for patients diagnosed with idiopathic peripheral neuropathy. According to an April 5, 2006 press release from the American Academy of Neurology, "impaired glucose tolerance is found in 40 percent of patients with idiopathic neuropathy (nerve damage with no identified secondary cause). Impaired glucose tolerance neuropathy (IGTN) is characterized by loss of nerve fibers in the skin, and is painful. It is thought that IGTN represents the earliest stage of diabetic neuropathy". A lead researcher concludes that the finding is "significant because it suggests that the earliest stage of prediabetic nerve injury may be reversible." New Pain Drug Shows Promising ResultsLacosamide, an investigation drug formerly known as SPM 927, has shown promising results as a treatment for painful diabetic neuropathy. In a recently completed phase III clinical trial with oral lacosamide involving 460 patients with painful diabetic neuropathy, patients receiving the drug, rather than a placebo, reported a statistically significant reduction in pain. Lacosamide is an anti-convulsant drug that is also being developed for epilepsy. In the double-blind, placebo-controlled, multi-center trial, patients suffering from diabetic neuropathy took either a placebo or the medication (200 mg/day, 400 mg/day or 600 mg/day) for 4 ½ months. The target dose of 400 mg/day showed a 'clinically relevant reduction' in pain. The main side effects included dizziness, nausea, headache and fatigue. Diabetic neuropathy is one of many complications associated with diabetes, with nearly 60 percent of diabetics suffering some form of nerve damage. It is a progressive disease that can involve loss of sensation, as well as pain and weakness, in the feet and sometimes in the hands. A press release on the Schwarz Pharma website states that the "results from the overall clinical development program to date should pave the way for a filing with the European and US regulatory authorities." The study was funded by Schwarz Pharma in Monheim, Germany. Dutch Researchers to Study Vitamin C Treatment for CMT1AA 2004 study by French researchers showed that high doses of ascorbic acid (vitamin C) could improve or stabilize motor function in mice with Charcot-Marie-Tooth (CMT) disease type 1A. In addition, vitamin C seemed to help promote the formation of myelin (the protective covering of the nerve) and restore the lifespan of the treated mice to that of normal mice. The Dutch team is being led by Dr. Camiel Verhamme, Department of Neurology, Academic Medical Center , University of Amsterdam . The researchers have designed a randomized*, double-blind**, placebo controlled*** study that will include CMT1A patients between the ages of 12 - 25. The participants will take either vitamin C or placebo capsules twice daily, for one year. As of mid-February 2006, the study, Ascorbic Acid Treatment in CMT1A Trial (AATIC), was not yet open for patient recruitment. You can find more information about the vitamin C trial by clicking on this link. Information about clinical trials in general can be found on the Jack Miller Center website's Clinical Trials page. The National Institutes of Health sponsors ClinicalTrials.gov, a website that offers up-to-date information for locating federally and privately supported clinical trials for a wide range of diseases and conditions. After opening the website, choose a medical condition, such as neuropathy or pain, and a location. The site will list clinical trials fitting your criteria. * Randomized: A study in which participants are randomly (i.e., by chance) assigned to one of two or more treatment arms of a clinical trial **Double-blind: A clinical trial design in which neither the participating individuals nor the study staff knows which participants are receiving the experimental drug and which are receiving a placebo ***Placebo controlled: A method of investigation of drugs in which an inactive substance (the placebo) is given to one group of participants, while the drug being tested is given to another group. The results obtained in the two groups are then compared to see if the investigational treatment is more effective in treating the condition. Over-the-Counter Supplements May Help Diabetic Neuropathy
More than 18 million people in the US suffer from diabetes, a chronic condition where the body does not make enough insulin, or it does not respond to insulin properly. Diabetic neuropathy, one of the most common complications of diabetes, can be painful and disabling. Symptoms include numbness, pain, tingling, burning and weakness in the hands, arms, feet, and legs. There currently is no cure for diabetic neuropathy, but several new treatments for the pain of diabetic neuropathy have become available. These include two new prescription medications (Cymbalta® and Lyrica®) and two over-the-counter supplements. Recent studies involving acetyl-l-carnitine (ALC), a naturally occurring amino-acid, and alpha lipoic acid (ALA), an antioxidant, suggest that that the two over-the-counter supplements may help reduce pain and other symptoms associated with diabetic neuropathy. It’s a good idea to check with your doctor or healthcare provider before using these or any other supplements. Although acetyl-l-carnitine and alpha lipoic acid appear to be generally safe at low-to-moderate doses, taking supplements in combination with other medications, or substituting them in place of medicine your doctor has prescribed, could lead to harmful results. Alpha lipoic acid, in particular, may lower blood glucose levels. Also, keep in mind that supplements are regulated as foods, not drugs, so there could be quality issues in the manufacturing process. Acetyl-L-CarnitineA study reported in the January 2005 issue of Diabetes Care suggests that acetyl-l-carnitine (ALC), a naturally occurring amino acid sold as a dietary supplement, may help reduce the pain of diabetic neuropathy, occurring in one-third of people with diabetes. Researchers looked at the results of two studies involving 1,257 people in the US, Canada and Europe with diabetic neuropathy. Patients treated with 1,000 milligrams three times a day of acetyl-l-carnitine had significant improvement in pain after both 6 months and 1 year of treatment. Those experiencing the greatest pain relief were patients with type 2 diabetes who took their medications as directed, and whose diabetes was less than optimally controlled. Type 2 diabetes is less severe and progresses at a slower rate than type 1 diabetes. The studies confirm the importance of early treatment for diabetes. Patients getting the most pain relief were those who had type 2 diabetes for the shortest length of time. In addition, this group showed improvements in nerve regeneration and sensation. Although acetyl-l-carnitine is not currently approved by the US Food and Drug Administration (FDA) to treat diabetic neuropathy, it is used in Europe to treat painful neuropathy in patients with diabetes and AIDS. Researchers from Wayne State University School of Medicine are working with the FDA to get acetyl-l-carnitine formally approved for painful diabetic neuropathy. Alpha Lipoic AcidAlpha lipoic acid (ALA), a naturally occurring chemical that is similar to a vitamin, has been shown to significantly and quickly reduce the pain, burning, and numbness associated with diabetic neuropathy. Alpha lipoic acid is an antioxidant — a substance that deactivates a wide array of cell-damaging substances known as free radicals in a process known as oxidative stress. High levels of blood glucose are one cause of oxidative stress. Alpha lipoic acid has been used for many years in Europe, but until recently, many doctors in the US felt that there was insufficient research evidence to recommend its use. However, a collaborative study between the Mayo Clinic and a Russian medical center, published in the March 2003 issue of Diabetes Care, found that diabetic patients treated with an intravenous form of alpha lipoic acid showed dramatic improvements in pain and other symptoms in less than 3 weeks. Alpha lipoic acid is only available in tablet and capsule form in the US. Alpha lipoic acid is generally safe at low-to-moderate doses. It can, however, lower blood sugar levels, so people with diabetes would need to monitor their blood sugar levels carefully. Alpha lipoic acid can also lower blood levels of minerals such as iron, interact with other medications, and decrease the effectiveness of some chemotherapy drugs. Mild side effects can include headache, skin rash and stomach upset at high doses. Researchers say that longer studies are needed to determine the long-term benefits, safety and effectiveness of alpha lipoic acid as a treatment for diabetic neuropathy. Brian Popko Featured in Wall St. Journal ArticleBrian Popko, Ph.D., director of the Jack Miller Center for Peripheral Neuropathy, was highlighted in a January 20, 2006 Wall St. Journal article about a new collaborative approach to scientific research. Dr. Popko is one of five neuroscientists in the U.S. and Canada receiving funding from the Myelin Repair Foundation to study myelin (the protective covering of the nerve), myelin repair, and myelin's role in multiple sclerosis and certain forms of peripheral nerve disease. The Myelin Repair Foundation, a nonprofit foundation based in California, has developed an innovative research model aimed at encouraging scientists to work together, sharing results and data, to speed the process of moving biomedical discoveries into effective treatments for a range of demyelinating disorders. The team of researchers consists of Dr. Popko, along with Dr. Ben Barres (Stanford University), Dr. David Colman (McGill University), Dr. Robert Miller (Case Western Reserve University), and Dr. Stephen Miller (Northwestern University). In addition to meeting in person twice a year and scheduling periodic phone and video conferences, the group regularly exchanges information by email. In a June, 2005 press release, the Myelin Repair Foundation announced that the research team had discovered three important signals in the brain and spinal that "appear to turn on and off the nerve cell's ability to repair myelin." Read the Wall St. Journal article Cymbalta® and Lyrica®: New Treatments for PainTwo new prescription medications, Eli Lilly's Cymbalta® (duloxetine) and Pfizer's Lyrica® (pregabalin), have recently been approved by the US Food and Drug Administration to specifically treat neuropathic pain in adults. Cymbalta® is approved to treat pain associated with diabetic neuropathy; Lyrica® is approved to treat diabetic neuropathy and postherpetic neuralgia. Cymbalta® joins a group of other antidepressants such as amitriptyline (Elavil®, Endep®), which are known to be effective in treating neuropathy. Similarly, Lyrica® joins a group of other anti-seizure drugs such as Neurontin®(gabapentin), which also are known to be effective in treating neuropathy. Cymbalta® (Duloxetine)Cymbalta® (duloxetine), a new type of antidepressant, has been approved by the FDA to treat pain associated with diabetic peripheral neuropathy in adults. It is available by prescription from your doctor. Diabetic peripheral neuropathy, the most common complication of diabetes, affects more than 60 percent of diabetics. Although Cymbalta® can't change the underlying nerve damage caused by diabetic peripheral neuropathy, it may help relieve the stabbing, burning and shooting pain often associated with the disease. Cymbalta® can be taken once a day and some tests showed that it was particularly helpful in reducing pain at night. Cymbalta®, like all prescription drugs, can produce side effects, so it important to talk to your doctor before starting this or any medication. The most common side effects are nausea, sleepiness, constipation, dizziness and decreased appetite. Research suggests that Cymbalta® acts as an antidepressant and pain reducer because of its effect on two naturally occurring chemicals in the central nervous system, serotonin and norepinephrine. For complete product information, please read the full prescribing information (128k pdf). Lyrica® (Pregabalin)Lyrica® (pregabalin), Pfizer's new and eagerly anticipated medication, has been approved by the FDA to treat two of the most common forms of nerve pain, diabetic peripheral neuropathy and postherpetic neuralgia (shingles), in addition to treating partial-onset seizures in adults with epilepsy. Lyrica® is classified as a controlled substance with the lowest potential for misuse or abuse, similar to some cough suppressants containing small amounts of codeine. According to Pfizer, Lyrica® has a newly defined mechanism of action. In clinical studies involving more than 9,000 patients, the most common side effects included dizziness, sleepiness, dry mouth, weight gain, and difficulty with concentration/attention. For complete product information, please read the full prescribing information. Lyrica® is seen as Pfizer's successor to Neurontin® - a widely prescribed and hugely successful epilepsy drug that is now available in generic form as gabapentin. Once a drug is approved by the FDA for a single disease or condition, doctors may prescribe it for other conditions. In this case, Neurontin® has frequently been used to treat pain related to conditions like diabetes. If you take Neurontin®, you might be able to save money by getting the generic form (gabapentin). Ask your doctor whether the generic is right for you. Dr. Roos Again Named "Top Doctor"
Dr. Roos has had a long-standing interest in neuromuscular diseases and neurodegenerative diseases, including neuropathy, amyotrophic lateral sclerosis (Lou Gehrig's disease), multiple sclerosis, and prion disease. He is also involved in the use of viruses for gene therapy of disorders of the peripheral and central nervous system. In addition to seeing peripheral neuropathy patients in the Jack Miller Center for Peripheral Neuropathy Clinic, he co-directs a Muscular Dystrophy Association ALS/Motor Neuron Disease clinic. The annual Chicago Magazine list, compiled by Castle Connolly Medical Ltd., is based on recommendations from thousands of Chicago area health professionals who were asked where they would send family members to receive the best care in 58 different medical specialties The Jack Miller Center for Peripheral Neuropathy is part of the University of Chicago Hospitals, the only Illinois hospital ever included in the Honor Roll of Best Hospitals in the United States by U.S. News & World Report.
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Dr. Raymond Roos (in photo at right), Professor of Neurology at the University of Chicago, gave an overview of peripheral neuropathy and described the range of treatments that are currently available to treat symptoms. 
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