Research | Tick Bytes

A Clinical Data Repository

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.

No Data Found

The National Institutes of Health allocated only 0.24% ($420,558) of its total Lyme research budget for human treatment studies from 2013 to 2020.

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

Our Plan to Fix it

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Collect anonymized patient clinical data (symptoms, lab results, treatment effectiveness, etc.)

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Organize the patient data in a secure, privacy-protected database that we’re calling Tick Bytes

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Have researchers analyze the data to find ways to improve diagnoses and treatments

GIFS Via GIPHY

Our Plan to Fix it

0

Collect anonymized clinical patient data (symptoms, lab results, treatment effectiveness, etc.)

0

Organize the patient data in a secure, privacy-protected database that we’re calling Tick Bytes

0

Have researchers analyze the data to find ways to improve diagnoses and treatments

GIFS Via GIPHY

It Begins in the Clinics

Our community sites will collect data from the nation’s top clinics. These sites will be placed in states with a high incidence of tick-borne diseases.

We’re partnering with some of the nation’s top universities, beginning with Harvard, to collect clinical data.

After we fine-tune our data collection and storage processes, we’d love to add global sites into our network of clinics.

Why Clinical Sites...

We aim to collect, validate, and publish the most effective treatment protocols used by our clinic practitioners, to improve the cure rate for all.
AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY DC

We need more funding to expand to other states. If you’d like to help make a Site in NJ a reality, you can donate to us here!

We need more funding to expand to other states. If you’d like to help make a Site in NY a reality, you can donate to us here!

We need more funding to expand to other states. If you’d like to help make a Site in CT a reality, you can donate to us here!

We need more funding to expand to other states. If you’d like to help make a Site in CA a reality, you can donate to us here!

We need more funding to expand to other states. If you’d like to help make a Site in MD a reality, you can donate to us here!

We need more funding to expand to other states. If you’d like to help make a Site in WA a reality, you can donate to us here!

We need more funding to expand to other states. If you’d like to help make a Site in TX a reality, you can donate to us here!

This is our first academic Site! More information about it will be updated here when it’s available.

This is our second academic Site! More information about it will be updated here when it’s available.

We’re still reaching out to potential academic Sites. When we find the right fit, it’ll be posted here.

We’re still reaching out to potential academic Sites. When we find the right fit, it’ll be posted here.

How Clinical Data Gets Collected

questionnaire

Jane and her physician fill out a comprehensive, tablet-based questionnaire about her tick-borne illness symptoms, history, and treatment protocols.

collection

A professional data engineer extracts the clinic’s electronic medical records for labs, notes, diagnostic codes, and other data deemed useful for analysis.

REVIEW

A data quality review is completed by a local coordinator, primary clinician, and then chief data scientist to ensure that the data is error-free.

TRANSMISSION

Jane’s data, along with de-identified patient data from other clinics, is sent to our Tick Bytes servers. Tick Bytes is a HIPAA-compliant, REDCap-based data platform.

analysis

As Tick Bytes grows, the clinical data pool will be made accessible to researchers, data scientists, and other qualified professionals.

How Clinical Data Gets Collected

questionnaire

Jane and her physician fill out a comprehensive, tablet-based questionnaire about her tick-borne illness symptoms, history, and treatment protocols.

collection

A professional data engineer extracts the clinic’s electronic medical records for labs, notes, diagnostic codes, and other data deemed useful for analysis.

REVIEW

A data quality review is completed by a local coordinator, primary clinician, and then chief data scientist to ensure that the data is error-free.

TRANSMISSION

Jane’s data, along with de-identified patient data from other clinics, is sent to our Tick Bytes servers. Tick Bytes is a HIPAA-compliant, REDCap-based data platform.

analysis

As Tick Bytes grows, the clinical data pool will be made accessible to researchers, data scientists, and other qualified professionals.

Why Fund Tick Bytes?

What is tick bytes?

A shared clinical data repository that delivers faster, cheaper, and better data to researchers.

What problem will tick bytes solve?

It will deliver more, high quality patient data to tick-borne disease researchers, who will in turn make this evidence available to all clinicians.

why isn't that happening now?

— Low gov’t funding.
— Minuscule funding for tick-borne disease co-infections.
— The patient data pipeline is leaky.
— The cost/difficulty of collecting patient data.

Need more information?

Watch this video to learn how a large clinical data repository could significantly reduce the public health burden of tick-borne diseases.

In this video, Invisible International’s Education Co-Director, Christine Green, M.D, discusses the impact that a large clinical data repository could have on tick-borne disease research.

At Invisible International, we believe that there are effective treatments out there for Lyme patients. The problem is that these treatments could be underutilized as they haven’t been validated by the medical and scientific community. It’s difficult to understand what treatments are/aren’t working for patients without a reliable pool of data to make conclusions from thorough analysis. We hope to fix this by the evidence gathered through the Tick Bytes Clinical Data Repository.

As Tick Bytes grows, professionals will be able to take our data and use it effectively to create the outcomes shown below.

questionnaire

Budget

We need $500,000 to get the first clinical site up and running. Here is a breakdown of how donations will be spent.

Study Site Grants - 47%

Direct funding for site-specific clinical data collection and investigator oversight

scientific team - 38%

Research leadership, outcomes research experts, biostatisticians, and data scientists

Research Operations - 8%

Data platform access and operations, site and grant management

Technology & Tools - 4%

Hardware, data storage, IRB fees

Advocacy & Communications - 3%

Conferences, meetings, outreach and advocacy efforts

No Data Found

Help us make it a reality.