POND Brain Bank

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Mission Statement

The POND Brain Bank offers an integrated educational, clinical, and experimental resource to the Georgetown University Medical Center, MedStar Health neuroscience community, patients, and their families. We provide detailed neuropathological evaluations and manage the procurement, storage, and distribution of tissue and biofluids to researchers worldwide to discover biomarkers for PANDAS/PANS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections/Pediatric Acute-Onset Neuropsychiatric Syndrome).

What does POND Mean?

POND stands for “PANDAS/PANS and Other Neuroimmune Disorders.”

What is the POND Brain Bank, and What Cases Will be Accepted?

In January 2022, the POND Brain Bank was established and became part of the Georgetown Brain Bank. It is the world’s only repository solely dedicated to brain tissue from donors diagnosed with “PANDAS/PANS and other Neuroimmune Disorders.” The Alex Manfull Fund (TAMF) played a crucial role in establishing the POND Brain Bank to make brain tissue available for research, advancing clinical understanding and benefiting patients and their families.

Tissue requests for research are reviewed by a Biospecimen Use Committee composed of esteemed researchers and clinicians from neurology, psychiatry, rheumatology, and neuroscience.

How to Arrange a Brain Donation

The POND Brain Bank accepts donations from individuals diagnosed with “PANDAS/PANS or Other Neuroimmune Disorders,” as well as those without neurological diseases, which are essential for comparison in research.  For individuals interested in providing tissue upon their passing, they can let family and physicians know and indicate their wishes in a living will or other documentation.

If a loved one diagnosed with PANDAS/PANS has passed away and you wish to donate the individual’s brain for research, please contact us immediately. Brain tissue is most beneficial soon after death. We understand this is a difficult time, and the POND Brain Bank is available to assist with coordinating the donation process.

Family FAQs:

What happens to the brain after donation? After consent forms are signed, our team will respectfully perform the autopsy and share the results with the family. It takes several months to generate a neuropathological report. The brain tissue will be stored at our brain bank and made available to researchers for future research.

What if the autopsy needs to be conducted elsewhere? We can collaborate with other Pathologists/Medical Examiners. Contact the POND team before the autopsy occurs.

Is there a fee associated with donations to the POND Brain Bank? No, there is currently no fee associated with donations.

Can donations come from individuals who are not diagnosed with PANDAS/PANS? Yes, brain tissue from donors without neurological diseases is needed for control purposes in research. Tissue from donors with other neuroimmune disorders, such as Sydenham’s chorea, encephalitis, and Lyme disease, is also essential.

Does my family need to be affiliated with MedStar Georgetown University Hospital or Georgetown University to donate? No affiliation is necessary at this time, while we have funding for this service.

Researcher FAQs:

What is the process and timeline for obtaining samples for research?

  • Tissue requests and applications are reviewed on a rolling basis. The Biospecimen Use Committee will discuss the application and vote on approval. If questions arise, someone on our team will contact the researcher.
  • Once approved, our team will discuss the details of tissue use and transfer with the researcher.
  • A Material Transfer Agreement (MTA) will be drafted and sent to the researcher for review.
  • The POND Director and Biospecimen Use Committee work closely with each researcher to optimize experimental plans, validate assays, and ensure the advancement of understanding these disorders.