Georgetown Brain Bank

In light of the current Coronavirus pandemic and massive vaccination campaign, the Georgetown Brain Bank is operating with a new policy. We have instituted requirements that must be satisfied before a donor is accepted into our program. We can accept a donor after 2 weeks of full dose of COVID-19 vaccination without a further COVID-19 test. Non-vaccinated donors must be tested for COVID-19, and the test results must be negative. Testing should take place within 5 days prior to the passing of the donor. In special circumstances, postmortem testing may be possible. We can also refer families to an independent pathologist who is able to do tissue procurement for all donors, but the family will incur the costs. Please contact Carolyn Ward, Georgetown Brain Bank Coordinator, at 202-687-4466 for additional information.

If you wish to specify research funding be used for clinical trials or a specific disease, please include that information in Special Instructions on the giving form.

Mission Statement

The Georgetown Brain Bank provides an integrated educational, clinical, and experimental resource to the Georgetown University Medical Center and MedStar Health neuroscience community and our patients and their families. We provide detailed neuropathological evaluation as well as stewardship of tissue/biofluid procurement, storage, and distribution.

Introduction

Medical autopsy remains the “gold standard” for diagnosing and classifying neurological diseases. Autopsies also allow (when permitted) collection of tissues and biofluids for research into the pathology of specific diseases. However, reimbursement for autopsies by the federal government, even at academic medical centers, is very limited. As a result, autopsy rates have dramatically decreased in recent years. This is occurring at a time when small and large scale clinical trials for new neurotherapeutics desperately need to have established diagnoses during studies and confirmed upon autopsy and when the genetics of diseases need to be correlated with pathological and clinical findings.

We established the Georgetown Brain Bank (GBB) in late 2011 to serve three key constituents of our academic medical center: our patients and clinicians, our trainees/students, and our researchers.

Families and the clinical teams caring for our patients with neurological diseases will benefit from a careful neuropathological examination to provide accurate diagnoses and context to patients’ illness and valuable information for descendants.
Medical students, neuroscience graduate students, and house staff will learn about neurological diseases from educational sessions on neuropathology.
The research community will have access to well-characterized tissues/fluids to allow for translational research projects and collaborative neuropathologists to assist them. Clinical researchers will be able to confirm diagnoses crucial to understanding results of their trials.

Progress to Date:

Cases

We have been very successful in recruiting interested families receiving care from the Memory Disorders Program and MGUH Neurology Department for donation of tissues to the GBB. To date we have tissue donations in the GBB with diagnoses ranging from controls (no CNS diseases) to ALS, Alzheimer’s disease, Parkinson’s disease, Brain tumors, Diffuse Lewy Disease, and Frontotemporal Dementia.

Funding

Several grateful families have made philanthropic donations which have been essential to supporting the initial establishment of the GBB. However, this funding will expire soon.
We have received foundation grant support from Target ALS to work with other prominent academic medical centers in the United States for ALS tissue banking specifically. Dr. Harris serves as the lead neuropathology coordinator for this multi-center project.
Georgetown University Medical Center and MedStar Georgetown University Hospital have provided continuing support for the GBB.

Protocols

We have developed specific protocols for tissue banking, obtained support from the MedStar Georgetown University Hospital’s Neurology Department for an autopsy coordinator, worked with Georgetown University informatics colleagues to develop a Redcap secure on-line database for case information, involved multiple students and trainees in conferences reviewing the pathology of each case, provided detailed neuropathological reports for families/clinicians, presented Clinical Pathological Correlations (CPCs) on cases to clinical teams, and provided tissues after signing material transfer agreement to Georgetown University as well as external NIH and other University investigators and pharmaceuticals company in USA and globally for disease treating/curing research.

Ongoing Goals

To work with GUMC/MGUH Development Offices to explore philanthropic funding sources to support the growth of the GBB.
To continue refining logistics for CNS-only autopsies at MGUH and other MedStar Hospitals, hire/allocate personnel to support the GBB, and maintain physical equipment/space.
To work with GUMC investigators to incorporate biofluids as part of the GBB repository.
To provide de-identified tissue/fluid samples to GU/MGUH/Medstar investigators and external investigators directly collaborating with these investigators.
To identify further external grant/contract support for CNS biobanking program.
To work with the Washington Regional Transplant program and DC Office of the Chief Medical Examiner to expand our collections.

The decision to undergo a medical autopsy and provide tissues for a brain bank is a very personal one for patients and their families. Discussion among family members and with care providers is important. At present, the GBB is not funded to accept tissues exclusively as a donation (except in specifically grant funded projects). Tissue donation is, however, may be possible in conjunction with the medical autopsy. There is no cost to families, (with the possible exception of transportation fees often charged by the funeral home to deliver and retrieve the body to/from MGUH), for a CNS autopsy and tissue donation. However, the person must have been a MGUH patient at some point in the past or at present and have a Georgetown physician to assist with the consenting process and request of the autopsy.

Families unaffiliated to MGUH and not covered through a specific research study protocol may be eligible for a consult neuropathology evaluation and tissue donation but will have to pay for brain autopsy services.

Competent individuals may indicate their desire for brain autopsy and donation in their living will so that family members know their wishes and can discuss this with their clinicians. Most often individuals do not die in the hospital and logistics need to be arranged with the families’ chosen funeral home, the next-of-kin, the patient’s physician, and the GBB. Permission for the autopsy and donation can only be given after the individual has passed away.

Tissues for research are most beneficial soon after death, and having the logistics worked out in advance is very helpful. The GBB is available to assist with this. Our Neurology Autopsy Coordinator can be contacted for information and forms to review (Ms. Carolyn Ward, cw2@georgetown.edu or 202-687-4466). Dr. Harris and Dr. Khan are also available to answer questions and discuss the process.

While some funding for the GBB is being provided by GUMC and MGUH, the GBB will only be sustainable with significant philanthropic and grant support. We seek to obtain support to maintain current operations as well as to assist families with all transportation fees and allow for after-hours/weekend autopsies. If you would like to make a tax-deductible donation to the GBB please contact our Development Office at 202-687-4491 or see link on this page for “Make a Gift”.

Georgetown Brain Bank

Mission Statement

Introduction

Progress to Date:

Cases

Funding

Protocols

Ongoing Goals

Contact Information

Brent T. Harris, MD, PhD

Galam A. Khan, MD

Carolyn Ward, MSPH