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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

New National Lyme Disease Biobank Aims to Accelerate Lyme Disease Research by Making Lyme Patient Samples From the East Coast, West Coast, and Midwest Available to Researchers 

Qualified researchers now have one-stop access to patient samples from Long Island, San Francisco Bay Area, Martha’s Vineyard, and Marshfield, Wisc.

Portola Valley, Calif., January 24, 2017 – Bay Area Lyme Foundation, a national organization funding research to make Lyme disease easy to diagnose and simple to cure, announces the launch of the Lyme Disease Biobank, which is the first program to provide researchers with blood and urine samples from people with acute Lyme disease from multiple regions across the country, including the East Coast, West Coast and Upper Midwest.

“One of the biggest barriers to research is a lack of samples from people confirmed to have Lyme disease – our program aims to alleviate this,” said Liz Horn, PhD, MBI, principal investigator, Lyme Disease Biobank. “Our efforts will unlock a huge bottleneck and make it possible for more scientists to conduct desperately needed research in Lyme disease.”   

The Lyme Disease Biobank will dramatically increase the volume of well-characterized samples to enable research efforts to accelerate medical breakthroughs in the understanding, diagnosis and treatment of Lyme disease as well as co-infections. More than 95% of Lyme disease researchers (n=50) reported that they do not have access to the samples they need for their research, according to a 2016 survey conducted by Lyme Disease Biobank.

Because the bacterial strains which cause many tick-borne infections have been shown to vary from region to region, the Lyme Disease Biobank offers researchers the unique opportunity to explore potential new diagnostics against a range of bacterial strains. Samples from patients and healthy controls are currently available from East Hampton, New York, Martha’s Vineyard, Mass., and Marshfield, Wisc., and collections will soon become available from centers in the San Francisco Bay Area, Calif. Each sample undergoes several tests, including Serology (ELISA, Western Immunoblot IgM/IgG; C6 Peptide) and qPCR, in order to confirm the diagnosis of Lyme disease and any co-infections (or for the controls, to rule out a diagnosis). Currently there are samples available from more than 250 individual participants.

Each application for samples from researchers undergoes a peer-review process by three members of the Lyme Disease Biobank reviewer pool, which consists of 39 scientists and clinicians each with specific expertise related to tick-borne illness. The Lyme Disease Biobank Board will use the recommendations of these experts and the Principal Investigator to determine allocation of samples. Approvals will be based on technical merit, potential to advance diagnostics, the likelihood of increasing understanding of Lyme disease and other tick-borne infections, and alignment with the Lyme Disease Biobank scientific goals and objectives. Nine investigators have thus far been approved to receive samples.

Lyme Disease Biobank is fully supported by Bay Area Lyme Foundation, which has received several substantial grants that help fund this effort. Bay Area Lyme Foundation’s financial commitment has included: investigations and research to develop criteria for collections and distribution of samples; identification of appropriate initial locations and initiation of collections at pilot sites; enrollment of clinical participants at multiple sites; collection and storage of samples; sample testing; maintenance of the proper environment for samples; and appropriate follow-up on research to ensure completion and scientific collaboration as appropriate. Researchers approved to receive samples are required to pay a nominal fee for samples to cover the cost to retrieve and ship the requested samples.

About Lyme Disease Biobank
Launched in 2015, the Lyme Disease Biobank is collecting human biological samples, including blood and urine samples, from people with early suspected Lyme disease or other tick-borne infections, as well as people who have never had Lyme disease as the control group.  The Lyme Disease Biobank is a Type I supporting organization of Bay Area Lyme Foundation.  Researchers interested in obtaining samples should visit www.lymebiobank.org.

About Lyme disease
One of the most common infectious diseases in the country, Lyme disease is a potentially debilitating 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.

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Contact:
Tara DiMilia
Phone: 908-884-7024
Tara.DiMilia@tmstrat.com

3 Comments on “New National Lyme Disease Biobank Aims to Accelerate Lyme Disease Research by Making Lyme Patient Samples From the East Coast, West Coast and Midwest Available to Researchers

  1. I am interested in leaving my remains specifically for Lyme research. Would this be something of interest to the biobank? I am needing to get the paperwork together for my end of life wishes.

    I was originally infected while on a camping-canoe trip on the Buffalo river in Arkansas in 1987 over Memorial weekend. While on a hike through a “rain forest”-type canopy, I sat down to wait on the others, evidently in a nest of nymph-stage ticks. The following day I joked that i had become a “freckled” person since our arrival. We laughed at the black dirt I couldn’t seem to clean off and jumped in the canoes for our adventure. It was very primitive, just an outhouse, our tents, the dog, and us… YES, we enjoyed and shared all of God’s creation for four days before heading back to Dallas,TX … You all know how the story goes from here on-for the most part anyway.

    After almost 31 years, a groshong, 52 PICC lines, a herxheimer induced death, AN AWESOME time in heaven (when I begged not to return to the horrible pain on earth), I had to return for five more infections (1 in Maryland, 4 in Wisconsin) … and to many years of continuous IV and oral abx [antibiotics] to count.

    I hadn’t yet been cured from the first infestation in 87…all that black dirt…I am 2-1/2 years on doxy and recently recovered my brain from another round of dementia. Now having only 40% of red blood cells I am having regular infusions of iron for anemia. SURRENDERED, I am going to let GOD and His grace treat the rest.

    From the start, I asked the journey not be in vain, so I hope a body consumed by Lyme and co-infections will help in some way whenever the time is truly up. Please advise how to proceed with the logistics.

    1. Mary, We are very sorry to hear about your experience and appreciate you sharing your story. Hopefully you are receiving appropriate care and support throughout this trial. No one should suffer like that.

      Of course, we can put you in touch with the Director of the Biobank, Dr. Liz Horn which we will do offline. We wish you health and recovery.

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