Research

Invisible is engaged in original research designed to accelerate the movement of evidence on better diagnostics, treatments, and cures to patient care.

Tick Bytes Clinical Data Research Platform

A nationwide clinical data repository to provide quality de-identified tick-borne illness patient data to researchers to facilitate the development of better symptom profiles, diagnostics approaches, and treatment protocols.

The Problem

There is an urgent need for better Lyme disease treatments, with cases hitting a record annual high of 475,000 in 2019. Studies show that the recommended Lyme disease treatment protocols fail patients somewhere between 10% to 36% percent of the time, yet the National Institutes of Health allocated only 0.31% ($420,558) of its total Lyme research budget for human treatment studies from 2015 to 2019. Primary care physicians are now trapped in a treatment-advice vacuum, with no effective strategies for helping the growing number of chronically ill tick-borne-disease patients. If the clinical data (symptoms, lab results, treatment effectiveness, etc.) of this very sick population could be organized and shared in a privacy-protected database, researchers could analyze it to find ways to improve diagnoses and treatments, preventing patients from suffering from long-term symptoms.

Our Solution

There is an urgent need for better Lyme disease treatments, with cases hitting a record annual high of 475,000 in 2019. Studies show that the recommended Lyme disease treatment protocols fail patients somewhere between 10% to 36% percent of the time, yet the National Institutes of Health allocated only 0.31% ($420,558) of its total Lyme research budget for human treatment studies from 2015 to 2019. Primary care physicians are now trapped in a treatment-advice vacuum, with no effective strategies for helping the growing number of chronically ill tick-borne-disease patients. If the clinical data (symptoms, lab results, treatment effectiveness, etc.) of this very sick population could be organized and shared in a privacy-protected database, researchers could analyze it to find ways to improve diagnoses and treatments, preventing patients from suffering from long-term symptoms.

Step 1 will define the data fields and structure of the clinical data repository and the process by which researchers access the privacy-protected information.

Step 2 will be a rollout of collection sites, including the refinement of a tablet-based patient questionnaire and a roadmap for launching the other sites.

Step 3 will be the publication of a pilot study that characterizes disease presentation, symptom etiologies, and treatment efficacy for these patients.

The Impact

By one estimate, medical costs for Lyme disease are estimated to be between $712M to $1.3B each year in the United States. Because of the lack of effective, informed clinical treatment protocols patients are suffering for years. Prevention of costly long-term health effects represents a significant savings to the medical system. This project would accelerate knowledge on tick-borne disease influencers, on geographic and coinfection symptom clusters, and on how to improve outcomes in individuals undergoing treatment. It should significantly reduce the economic and societal costs of these diseases over time.

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