About the Lyme Disease Tissue Collection Program

The Lyme Disease Biobank (LDB) has launched the Lyme Disease Tissue Collection Program to further accelerate Lyme disease research. This expansion 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.

The Program is made possible through a partnership with National Disease Research Exchange (NDRI), and enhanced through a partnership with LymeDisease.org

Surgical Tissue Donation

If you are planning to have a surgery that removes tissue from an organ or joint, such as knee replacement, the harvested tissue can be donated to this research program. Registered donors will complete an authorization and eligibility screening prior to donating tissue. Please note we are unable to accept tissue collected from surgeries in the past.

Eligibility Requirements

  • Must be 18 years of age or older
  • Reside in the continental US
  • Diagnosed with Lyme disease by a healthcare provider
  • Provide serology results
  • Additional information including medical history, laboratory testing results, and consultation with clinical experts may be part of the LBD’s final eligibility determination

Future Donations

All patients with Lyme disease are encouraged to register with the LDB Tissue Program. By providing information about your symptoms and medical history, you can assist researchers in understanding the disease, and can also register as a future donor of post-mortem organs. This is critical as it is rarely possible to evaluate how tick-borne disease may infect vital organs such as a person’s heart and/or brain. This important program will dramatically improve research efforts to accelerate medical breakthroughs in the understanding, diagnosis and treatment of Lyme disease and other tick-borne infections.

Things to Consider for Future Donations

  • Your family and loved ones must be aware of your wish to donate
  • The donation is anonymous – researchers will not be able to contact you or your family
  • Only organs and tissues needed for research will be recovered
  • The donation will not prevent you from having a traditional funeral
  • NDRI covers all costs associated with coordination of organ and tissue recovery; funeral and cremation costs remain the responsibility of the family decision makers

LymeDisease.org Partnership

As part of this program, the Lyme Disease Biobank is partnering with MyLymeData to enable the data collected from tissues to be paired with clinical information, such as symptoms, demographics, medical and social history, and history of Lyme disease and other tick-borne illnesses. More than 12,000 patients have enrolled in the MyLymeData registry, which was launched by LymeDisease.org and uses big data research tools to confidentially pool patient data to help find a cure. In addition to registering with NDRI, donors are encouraged to enroll in the MyLymeData Patient Registry at MyLymeData.org and connect their data with their tissue sample.

For More Information & to Register

To register for tissue and/or organ donation please complete the preliminary donor information form on the right side of the page on NDRI’s Private Donor Program website at www.ndriresource.org/lyme-disease or by calling NDRI at 800-222-NDRI (6374), Option 5. If you have additional questions please email the Biobank at info@lymebiobank.org.