Introducing the National Eating Disorders Brain Bank
In 2018, The Foundation for Research and Education in Eating Disorders (FREED) partnered with the Harvard Brain Tissue Resource Center (HBTRC) at McLean Hospital to launch the first National Eating Disorders Brain Bank.
Eating disorders, such as anorexia nervosa, bulimia nervosa and binge eating disorder, are neuropsychiatric illnesses which affect over 30 million children, adolescents and adults in the US. These conditions are associated with the high rates of other metal disorders, substance abuse, suicide and death. However, the causes of eating disorders are unknown, and the role that the central nervous system (CNS) plays in the development and complex symptomology of these conditions remain unclear.
- Determining the abnormalities in the CNS that cause or contribute to the onset and progression of eating disorders.
- Gaining insights into potential risk factors.
- Determining the anatomic and cellular/neuronal alterations underlying eating disorders and associated conditions.
- Examining the effects of altered nutrition on the structure and functions of the brain.
- Identifying brain systems that may be targeted to develop treatments.
How Does the Brain Bank Work?
FREED works with patients, families and other eating disorders organizations to grow a private, secure, registry with intended donors who have eating disorders. When a donor becomes available, their family immediately contacts FREED and/or the HBTRC. Thereafter, the HBTRC will go through the informed consent process with the donor’s legal next-of-kin, and arrange for the brain removal and transportation to the HBTRC. The HBTRC will also work with the family to obtain the release of the donor’s medical records so that de-identified clinical information can be provided to researchers for their studies.
Researchers requiring brain samples must submit a formal request using an application form to FREED or the HBTRC through the NIH/NeuroBioBank portal. These proposals are sent to FREED’s scientific advisors for review. If found to be meritorious, FREED will instruct the HBTRC to distribute the requested samples to the researchers.
All researchers/institutions are required to sign a “Material Transfer Agreement” before receiving samples. They are also obligated to acknowledge FREED and HBTRC in all communications of their research, and make findings available to other researchers and the public by timely publication in accessible, peer-reviewed, journals.
How to Become a Brain Donor
FREED and the HBTRC are working together to grow the brain bank collection to support research and discovery in eating disorders. To register your intention to become a brain donor, or if you know someone whose wish is to be a brain donor, please contact FREED at: (781) 647-6790.
All donor information and communications are confidential, and information is stored in a private, and secure registry that is in compliance with all applicable laws.
The national eating disorders brain bank is collecting samples from various eating disorders (i.e. anorexia nervosa, bulimia nervosa and binge eating disorder). Samples are stored at the HBTRC and distributed as formalin-fixed or flash-frozen blocks of tissues. If you require materials, please contact FREED at: (781) 647-6790.
*Note that the National Eating Disorders Brain Bank is in its early phases of development and so brain samples are not yet available for distribution. We will make an announcement as soon as samples are ready for release to researchers.
FREED is seeking funding to support the development and administration of the National Eating Disorders Brain Bank. This funding will be used to (a) grow the national registry of individuals who wish to become brain donors; (b) collect and store brains from individuals who had an eating disorder; and (3) distribute brain samples to researchers and institutions for approved scientific studies.
You can make a gift of any amount securely online by clicking here. Alternatively, if you wish to to discuss other giving opportunities or any aspect of FREED, contact FREED Executive Director Kevin St. P. McNaught, Ph.D.