Your Help Needed In Lyme Disease Research
It’s no secret that tick-borne diseases are a top public health concern in Newtown. As Newtown’s Health Director, it’s heart wrenching to hear of entire families being impacted, from doing schoolwork to be able to perform at work, effects range from disruptive to devastating and debilitating ... all from contracting a tick-borne disease.
For years Health Departments, especially in rural towns like Newtown, have focused their efforts on distributing tick-borne disease educational materials, sending out mailers, organizing presentations, writing articles for the newspaper, sending ticks for testing, which have resulted in little to no improved statistical evidence of lessening tick-borne disease cases.
Health care providers are hindered with an unreliable Lyme analytical lab test (false positives and negatives) plus many vary on determining when or when not to prescribe medication, being cautious of potentially over prescribing antibiotics. Published estimates report that only about 10% of Lyme cases are formally reported to the State Health Department and the Centers for Disease Control and Protection (CDC). I can only scratch my head when I read, according to State Health Department data that in 2010 Newtown had only 31 reported cases of Lyme disease.
However in an important step towards providing concrete answers about Lyme disease now there’s an opportunity for those in the area who have had Lyme disease to participate in helping clinicians obtain a better understanding of the disease. The “Lyme Disease Registry”, located at 131 West Street in Danbury, is operated by the Western Connecticut Health Network (Danbury & New Milford Hospital) Biomedical Research Institute. Its mission is Lyme disease research and to develop better diagnostic tools and treatment options.
The Registry is looking for those who are age 5 and older and who have been diagnosed with Lyme by a healthcare provider. Participants are asked to answer questions pertaining to their Lyme disease (symptoms and associated treatment) and give a small blood sample which will be used for testing related to Lyme disease research. After the initial visit the Registry will contact participants every six months by mail or email to complete a follow-up form. Participation is free (no insurance billing) and no visit is necessary after the initial visit. All information provided will be kept strictly confidential (HIPAA rules apply.) To participate contact the Registry at 203-739-8383 or by email: firstname.lastname@example.org.
The research needed to help move towards improved Lyme diagnosis and treatment is dependent on getting enough participants (the more the better.) I’m encouraging those in Newtown who have Lyme disease and are willing to participate in research to please sign up and help. It’s time to find the answers to the mystery. Personally I hope this leads to the day when I can report that tick-borne diseases are no longer a primary public health issue in Newtown.
Additional information about the Registry can be found at www.lymeregistry.org. Brochures can be obtained in the Newtown Health District located at the Municipal Center at 3 Primrose Street at .
Donna M. Culbert, Director of Health Newtown Health District
The above letter was published on the town's website.