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Lyme Disease Biobank Expands to Increase Understanding of Lyme Disease in Heart, Brain, Joints and Other Tissues

First-of-its-kind Biobank now accepts tissue donations from patients undergoing knee-replacements and similar surgeries, as well as patients who die with Lyme disease

Portola Valley, Calif., November 1, 2018 – Bay Area Lyme Foundation, a national organization funding research to make Lyme disease easy to diagnose and simple to cure, announces the addition of the Lyme Disease Tissue Collection Program to its Lyme Disease Biobank, which currently accepts blood samples. 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.

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.”

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.

About Lyme Disease Tissue Collection
The newly-launched Lyme Disease Tissue Collection Program is the only biobank collecting tissue samples for Lyme disease. As part of the Lyme Disease Biobank (LDB), which began in 2015, the program is collecting human biological samples, including authorized tissues, such as brain, musculoskeletal tissue, or heart, from both surgical and/or post-mortem people with persistent Lyme disease or other tick-borne infections. The program is being done in collaboration with the National Disease Research Interchange (NDRI) and MyLymeData.com, a project of LymeDisease.org. The LDB is a Type I supporting organization of Bay Area Lyme Foundation.

Potential donors can register for the Lyme Disease Biobank online through NDRI’s Private Donor Program (www.ndriresource.org/lyme-disease) or by calling NDRI at 800-222-NDRI (6374), Option 5. Researchers interested in obtaining samples should visit info@LymeBiobank.org.

About Lyme Disease
One of the most common infectious diseases in the country, Lyme disease is a potentially disabling infection caused by bacteria transmitted through the bite of an infected tick to people and pets. If caught early, most cases of Lyme disease can be effectively treated, but it is commonly misdiagnosed due to lack of awareness and unreliable diagnostic tests. There are about 329,000 new cases of Lyme disease each year, according to statistics released in 2015 by the CDC. As a result of the difficulty in diagnosing and treating Lyme disease, as many as one million Americans may be suffering from the impact of its debilitating long-term symptoms and complications, according to Bay Area Lyme Foundation estimates.

About Bay Area Lyme Foundation
Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is the leading public not-for-profit sponsor of innovative Lyme disease research in the US. A 501c3 non-profit organization based in Silicon Valley, Bay Area Lyme collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. A pivotal donation from The Laurel Foundation covers all overhead costs and allows for 100% of all donor contributions to Bay Area Lyme Foundation to go directly to research and prevention programs. For more information about Lyme disease or to get involved, visit www.bayarealyme.org or call us at 650-530-2439.

About MyLymeData
MyLymeData is a patient registry and research platform that was developed and launched by LymeDisease.org. Over 11,000 patients have enrolled in the registry, which uses big data research tools to allow patients to pool their data quickly and privately to help find a cure. Patients interested in enrolling in the MyLymeData Patient Registry should visit MyLymeData.org.

About NDRI
The National Disease Research Interchange (NDRI) is the nation’s leading source of human tissues, cells and organs for scientific research. A not-for-profit 501 (c) (3) organization founded in 1980, NDRI is funded in part by the National Institutes of Health, public and private foundations and organizations, pharmaceutical and biotechnology corporations. NDRI is a 24/7 operation that partners with a nationwide network of over 130 tissue source sites (TSS), including organ procurement organizations (OPOs), tissue banks, eye banks, and hospitals. The TSS, are distributed throughout the USA, in 45 states, with concentrations in major metropolitan areas on both the east and west coasts. Their wide geographic distribution allows NDRI to provide biospecimens from donor populations with diverse demographics and also facilitates the timely and efficient provision of fresh tissues directly to researchers across the U.S. and around the world. By serving as the liaison between procurement sources and the research community, NDRI is uniquely positioned to support breakthrough advances and discoveries that can affect advances in the treatment and cure of human diseases.  For more information about NDRI, visit www.ndriresource.org, or call us at 800-222-NDRI.

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