Background: Western Connecticut Health Network created the Lyme Disease Registry in response to the community's request and clinical need for more Lyme disease research. The registry includes acute, recovered, and persistently symptomatic patients to better define the different stages of the disease. The design of the registry was guided by community and clinician input through a community-based participatory research process.
Methods: Registry participants are asked questions regarding their diagnosis, symptoms, treatments, recovery, and satisfaction with the Registry. A blood specimen is also collected and stored at the initial appointment.
Results: The Lyme Disease Registry has enrolled 256 participants, 24% are acute cases, 45% are persistently symptomatic cases, and 31% are recovered cases. The symptoms experienced by the group of patients with persistent symptoms had unexpectedly strong overlap with those experienced by acutely infected patients.
Conclusion: The difference between symptoms in the acutely infected patients and those experiencing persistent symptoms is not as large as initially thought.
Keywords: community health; disease management; health outcomes; prevention; primary care.
© The Author(s) 2014.