Patient-Centered Lyme Disease Research Study Seeking Participants

 
Binghamton University SUNY is conducting and funding A biomarker and patient-reported outcomes research study in Lyme disease and other tick-borne illnesses and is seeking participants.
The purpose of the research is to establish a bio-bank of samples from patients with documented Lyme and other tick-borne diseases. These samples will be used to help better assess disease stages and complications. “Biomarkers to assess disease stages and treatment outcomes are lacking and characterizing biomarkers in patients affected by chronic Lyme disease are critical in understanding why some patients develop chronic illness even after the infectious agent has been cleared.” This excerpt from the announcement flyer put out by B.U.
A biobank is a collection of specimens in this case blood and urine, which is collected to be used in scientific studies to help understand diseases and complications to treatments. These bio-banks normally collect and store specimens not only for one specific study but also with patient consent, it is stored for future studies that may continue to offer information with additional goals. Collaboration with other scientists and laboratories is often needed to reduce costs in storage, equipment, and specialty.
This study is a discovery stage to see if there are identifying biomarkers that could be used to help identify which patients may be more prone to being infected with long-term persistence of disease as well as using the data to see why some treatments may help some and not others.  The current diagnostic testing of infection has low specificity and sensitivity. Development of a new diagnostic protocol for early detection will benefit future patients as well as improving understanding of molecular mimicry to monitor treatment response.
This study aims to enlist 400 patients, has no residency restrictions, and is highly dependent on several factors such as; how quickly patients apply to participate, the data that is collected, and if markers exist to what areas these might be applied. Participants of the study must be 18 or older and have a diagnosis of Lyme or another tick-borne disease, and be asked to visit the study site for collection only once. The diagnostic lab report confirming Lyme or another tick-borne disease must be submitted along with informed consent. Patients will fill out a questionnaire, and then submit samples.
Personal information is removed once the specimens are properly documented and destroyed to help safeguard patient privacy.
Patients will not receive any direct benefit other than being compensated $50 for their participation, but will be contributing to further a better understanding of these illnesses and may lead to better diagnosis and treatment. The study is funded and will be carried out by Binghamton University, in Binghamton NY.
For more information on the study, please contact Marissa Barbieri at 607-777-5970 or email [email protected].  **email Is the preferred method**
Please take note: The excerpt put out by B.U. contains language which insinuates the disease has been cleared. This is an area that has been shown in many trials and studies, has not been cleared, but does persist beyond the current IDSA guidelines. Reassessment of these guidelines is underway.
By Colleen Schake
Lyme Disease Coalition, Inc.