Nation's First Community Registry for Lyme

Danbury Hospital plans to establish the nation’s first community-based registry of patients with Lyme disease in an effort to increase public awareness and promote research about a puzzling disorder that, by conservative estimates, affects tens of thousands of people worldwide.

The hospital will gather data about the myriad of symptoms and treatments surrounding Lyme disease, a critical body of medical evidence that researchers can use to potentially develop better diagnostic tools and treatment options for Lyme disease.

“This registry represents the first step in objectively looking at symptoms and treatments to gain a better understanding of the true dimensions of the disease,” said John Murphy, MD, executive vice president of Danbury Hospital and a board-certified neurologist.

The establishment of the Lyme disease registry was made possible by a gift to the Danbury Hospital Development Fund from Laura and Dale Kutnick of Redding, Conn., whose son has suffered from the disease for years.

As a university teaching hospital located in the “epicenter of the epidemic,” Danbury Hospital provides the ideal venue for establishing the registry.

Ramin Ahmadi, MD, the hospital’s director of Graduate Medical Education and Research, said the registry will be “all-inclusive and scientifically based” with data from as many patients as possible. This includes patients with a clinical diagnosis determined by a blood test and patients with persistent symptoms that some experts label “chronic” Lyme disease.

Danbury Hospital intends to avoid the controversy within the medical community over the diagnosis and treatment of Lyme disease by taking an objective approach to the collection of data. “We want to reach out to the community and work with people with different views,” emphasized Ahmadi. “We hope this approach will satisfy critics and proponents, alike.”

The hospital has begun designing the survey tool and plans to establish a blood bank and an advisory board. Story continues, here.

Community-Based Registry, Continued

Story continues from Feb. 25

Murphy said the hospital will share the data with researchers as the registry grows. “Our goal is to assist researchers who lack a large-scale bank of information on patients with Lyme disease,” he said.

Lyme disease is caused by a bacterial infection primarily transmitted by deer ticks. The disease is prevalent across the United States and the world, with a large concentration in New England. An estimated 20,000 new cases are reported each year. Many infected people develop a large, circular red rash around the site of the tick bite. Other non-specific symptoms range from muscle and joint aches to neurological impairments.

The rate of Lyme disease is rising, as the debate rages about the best way to diagnose and treat the disorder. Some experts claim testing methods are inefficient; others argue over the manifestation of the disease months and years after the initial infection.

For example, treatment guidelines from the Infectious Diseases Society of America (IDSA) call for a short course of antibiotics to cure all cases, even recurring events. These experts say the lengthy, multi-symptom manifestation of the disease, known as chronic Lyme disease, doesn’t even exist.

On the opposite end of the spectrum are doctors led by the International Lyme and Associated Diseases Society (IDADS) who believe the bacteria can stay dormant in the body for months. They say the bacteria can come back to life leaving patients with an array of symptoms, including arthritis, neurological impairments, psychological problems and heart disease, which can be treated with a prolonged and complex course of antibiotics.

The Lyme disease registry at Danbury Hospital will prove valuable, regardless of your point of view, by better defining groups of patients according to their symptoms and treatments, noted Ahmadi. “The registry will identify a large, heterogeneous group of patients who will be followed over time to see how their illness progresses,” he said. “This may enable researchers to develop treatment options tailored to specific groups of patients.”

Laura Kutnick said she hopes the registry will draw national attention to a disease that is often misdiagnosed by a medical community that has disparate views about the condition.

The couple’s son, Toren, was first diagnosed with Lyme disease at age 11 after years of being misdiagnosed with tendonitis in both knees.

“One day he was running in the Junior Olympics,” she said, “the next day he couldn’t walk.” She said the family “missed the opportunity for early treatment” because physicians failed to recognize the symptoms.

Toren, now 20, thought he was cured until the symptoms - debilitating migraines, light sensitivity, and chronic joint pain -returned during his sophomore year at Cornell University.

“In the nine years since my son was first diagnosed, it was shocking to see how little had changed in the treatment and understanding of Lyme disease given the vast amount of progress that has taken place in the treatment of other diseases. Something had to be done to focus attention on Lyme,” she said. Kutnick said her younger children, Varyk and Kyja, have also shared their parents concern for their brother and friends who have grown up in Fairfield Country with a love of nature and outdoor activities.

The Kutnick family is not alone.

“We’re seeing many children who thought they were cured having a recurrence of the disease in early adulthood,” she said. “Everyone needs to understand that what may seem like an inconsequential tick bite can have huge, life lasting consequences. So many people have had their way of life changed, their livelihoods diminished, and their children’s future prospects erased by Lyme disease. This registry will be an important step towards providing a concrete consensus as to the existence of Lyme disease and its symptoms. It will also share best practice treatments with all those who suffer from the long term effects of this devastating disease.”

Danbury Hospital is a 371-bed regional medical center and university teaching hospital associated with New York Medical College, the Yale University School of Medicine, the Connecticut School of Medicine and Columbia University Medical Center.