Got Lyme?

Do you suffer from persistent/chronic health issues because of Lyme disease?

If yes, you may be able to participate in an important research project with the Lyme Disease Biobank (LDB) at Gordon Medical Associates, our collection site in San Rafael. By participating in the study you will assist researchers who are developing diagnostics to help future Lyme disease patients.

What do you have to do to participate?

The first step is to complete a short pre-screening questionnaire. You’ll be asked questions about your health history. Your screening questionnaire will be reviewed by the LDB team and, if you are eligible to participate, you will be contacted directly by Liz Horn, PhD, MBI.

 

 

If you are eligible to be part of this research project and you decide to participate, you will give small samples of blood and urine, and answer questions about your symptoms and health history. You will receive a $50 Amazon gift card as compensation.

 

 

 

 

What is the Lyme Disease Biobank?

The Lyme Disease Biobank (LDB) was created to collect blood and urine samples from people who have Lyme disease. Initially, our collection efforts focused on people with acute, or early Lyme. However, we now seek samples from people with persistent/chronic Lyme. Research has shown that 10-30% of Lyme patients have ongoing symptoms, which can be severe and debilitating. 

LDB has multiple collection sites on the East Coast, Upper Midwest, and California. Samples are used by researchers developing better diagnostics for Lyme disease and other tick-borne infections. LDB is a project of Bay Area Lyme Foundation, a national nonprofit organization whose mission is to make Lyme disease easy to diagnose and simple to cure. Funding for LDB is provided by the Steven and Alexandra Cohen Foundation through Bay Area Lyme.

Who is eligible?

We are looking for people 18 years and older who have been diagnosed with Lyme disease at least one year ago and have persistent/chronic symptoms for at least six months. Symptoms include the following:

• Fatigue
• Sleep impairment
• Joint pain
• Muscle aches
• Other pain
• Cognitive impairment (brain fog)
• Neuropathy (weakness and numbness typically in hands and feet)
• Headaches

To be eligible to participate, you must have symptoms of persistent Lyme disease, and be willing to give blood and urine samples and answer questions about your health history.

How do I participate?

Complete the pre-screening questionnaire here. Your responses will be reviewed by the LDB team to determine if you are eligible to participate. If you are eligible, you will be contacted directly by Liz Horn, PhD, MBI, with information about next steps. You will be able to schedule an appointment to donate your sample at our collection site in San Rafael. If you are not eligible at this time, we will contact you and let you know.

If you decide to participate, you will:

1. Complete the informed consent process with our research coordinator
2. Answer questions about your symptoms and health history
3. Provide blood and urine samples

Your participation in LDB is voluntary. Participants will receive a $50 Amazon gift card as a thank you.

Why is this study happening?

Recent estimates from the Centers for Disease Control and Prevention (CDC) suggest that as many as 476,000 people get Lyme disease each year in the United States. In as many as 30% of cases, even after treatment for early Lyme symptoms, people still experience persistent/chronic symptoms of the disease. LDB has been collecting samples from patients with early Lyme disease since 2014 and samples from patients with persistent/chronic Lyme since 2019. By collecting both early and persistent Lyme samples, we are helping researchers develop better diagnostics for all stages of Lyme disease. Each participant’s sample donation can support ~50 research projects.

What is tissue donation?

LDB seeks tissue donations from people with persistent/chronic Lyme disease or other tick-borne infections. Donations of human tissue are a vital aspect of our collection efforts. Tissues are given to approved researchers and provide a much-needed resource to understand these complex infections and how Lyme bacteria invade tissues and organs. Lyme Disease Biobank collaborates with the National Disease Research Interchange (NDRI) to collect surgical and post-mortem tissue samples and the My Lyme Patient Data Registry. Donors may choose to link their tissue sample with their MyLymeData profile.

To learn more about possible tissue donation, please visit ndriresource.org/lyme-disease or contact (800) 222-NDRI (6374), Option 5, or email PrivateDonor@ndriresource.org