In an update on the first-of-its-kind Biobank, the Bay Area Lyme Foundation announced the addition of the Lyme Disease Tissue Collection Program to its Lyme Disease Biobank, which currently accepts blood samples.

Borrelia burgdorferi spirochetes/CDC
Borrelia burgdorferi spirochetes/CDC

The expansion of the Biobank will allow for a greater understanding of the ability of Lyme bacteria to invade tissues and organs. The Lyme Disease Biobank is the only national entity working to accelerate research by collecting surgical and post-mortem tissue samples from individuals with persistent Lyme disease and other tick-borne infections.

“While we, as clinicians, see patients who have symptoms of internal organ dysfunction such as heart and brain issues because of Lyme disease, it is frustrating that we don’t have the research to truly understand what’s going on, or how to better diagnose and treat these patients,” said John Aucott MD, Associate Professor, Johns Hopkins University.

Vermont reports 1st death due to Lyme carditis

The program will dramatically increase the volume of well-characterized tissue samples to enable research efforts to accelerate medical breakthroughs in the understanding, diagnosis and treatment of Lyme disease and other tick-borne infections.

“Many of my Lyme patients have had knee replacements and other joint surgeries, which may be related to their Lyme disease. By donating tissue, they can help empower and arm researchers with the tools they need to find more answers,” added Dr. Aucott.

While it is rarely possible to evaluate heart and other organs of living humans, a recent pre-clinical study conducted out of Tulane University and funded by Bay Area Lyme Foundation, demonstrates that organs may be infected even if antibody tests are negative. The study found multiple Lyme bacteria in the brain tissue of primate subjects who had been treated with doxycycline, as well as in the heart, joints, bladder, skeletal muscle and adjacent to peripheral nerves of other subjects. It is important for researchers to be able to explore if the same thing is happening to our human patients.

“We have patients eager to give what they can so that research can find answers for them and others, and researchers are in great need of qualified tissues to help them better understand this disease,” said Liz Horn, PhD, MBI, principal investigator, Lyme Disease Biobank, a project of Bay Area Lyme Foundation. “The addition of tissue samples to the Lyme Disease Biobank brings together these two desires, allowing patient donations to be properly screened and qualified so that the Lyme disease research community can utilize these much-needed biomedical resources essential for their work.”

Lyme disease, other tickborne diseases up in 2017

The Lyme Disease Tissue Collection Program also aims to collect extensive clinical information from donors, such as symptoms, demographics, medical and social history, and history of Lyme disease and other tick-borne infections. If donors elect to enroll in the MyLymeData Patient Registry, they can connect their MyLymeData profile with their tissue sample. By pairing high quality tissue samples with robust clinical data, researchers can further examine patients’ medical histories to understand and explore how the bacteria that causes Lyme invade the body, causing symptoms that affect the joints, and the nervous and cardiovascular systems.

“The expansion of the Lyme Disease Biobank is such an exciting step toward understanding how and why tick-borne diseases affect people the way they do,” said Alexandra Cohen, president, Steven & Alexandra Cohen Foundation, whose generous donation helped usher the Biobank into reality. “As someone who has lived with Lyme disease for nearly a decade, I am hopeful researchers—now with access to tissue—will make discoveries that lead to new treatments for all sufferers.”

The Lyme Disease Tissue Collection Program is a collaborative initiative comprised of the Lyme Disease Biobank, National Disease Research Interchange (NDRI) and MyLymeData Patient Registry. People with Lyme disease interested in donating tissue are encouraged to contact NDRI to register for the Living Donor Registry. Participating individuals must be 18 years of age or older, reside in the continental US, and be diagnosed with Lyme disease by a healthcare provider. Registered donors will complete an authorization and eligibility screening prior to donating tissue. If a registrant has a surgery that removes tissue from an organ or joint, such as knee replacement, the harvested tissue can be donated to this research program. Patients who are registered can also elect to have their essential organs donated for research after their passing.

This tissue program builds on the Lyme Disease Biobank’s blood sample collection effort to fuel improved diagnostic tests for Lyme Disease. Currently, there are blood samples available from more than 435 participants, and each participant’s donation provides samples for ~50 research projects. To date, more than 30 research projects have used or are using samples from the Lyme Disease Biobank.