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.
