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The Eunice Kennedy Shriver NICHD BTB

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The NICHD Brain and Tissue Bank for Developmental Disorders is in contract to the Eunice Kennedy Shriver National Institute of Child Health and Human Development. We are located at the University of Maryland School of Medicine - Department of Pediatrics in Baltimore, Maryland.

The mission of the NICHD BTB is to advance the research of developmental disorders. The objective of this human tissue repository is to systematically collect, store, and distribute brain and other tissues for research dedicated to the improved understanding, care and treatment of individuals with developmental disorders.

Our Family web site is a separate web site dedicated to our tissue donors and their families. A registry of donors has also been established.

The recipient of tissue and the NICHD BTB are required to sign a Material Transfer Agreement before any tissues are transferred. All requests for tissue are to be submitted on-line.

The NICHD BTB has extensive experience in arranging for the rapid retrieval of tissue upon the death of individuals while at home, in hospitals or hospice care. The Bank is able to assist researchers who are working with patients who intend to donate tissues at the time of their death.

Meetings and Outreach

The Bank is very active in maintaining an ever growing and vital dialog with medical researchers, health care professionals, support groups, families and individuals. Scientific meetings and meetings of support groups are especially important to us. Learn more! 


Go to "Available Disorders" to list all cases available with information on demographics, tissues availability, length of tie in storage, the number of researchers who have requested tissue from each case and the number of tissue samples distributed. RIN values for RNA and 260/280 ratios of available DNA are listed for a significant proportion of the cases.

For access to a database with additional search functions it is necessary to obtain a password by going to the "NICHD BTB Portal". The portal also lists medical records and neuropathology reports that are in compliance with HIPAAA regulations.

Breakthrough Science

The laboratories of Anne Comi and Jonathan Pevsner have identified a somatic mutation resulting in Sturge-Weber Syndrome using tissue donated by families with this disorder to the NICHD BTB.

"Sturge–Weber Syndrome and Port-Wine Stains Caused by Somatic Mutation in GNAQ" Shirley et al., N. Eng. J. Med. 2013, DOI: 10.1056/NEJMoa1213507



Researchers have published nearly 100 papers utilizing over 5,000 frozen and formalin-fixed tissue samples distributed by the NICHD BTB from donors with ASD and matching controls.

Dateline BTB

March 2014 – John Cottrell attended the spring meeting of coroners in the state of Missouri. The invitation to make a presentation at this meeting was made by an attendee at the February meeting of the American Academy for Forensic Sciences in Seattle. Approximately 130 coroners were in attendance. John gave a 15 minute Powerpoint presentation detailing the need for referrals of individuals with autism spectrum disorders (ASD) and normal children. John also staffed an exhibitor booth to attract the attention of the coroners. This is a continued effort by the NICH Brain and Tissue Bank to reach out to coroners and medical examiners to participate in the donation of tissue for research.

February 2014 – The meeting of the American Academy for Forensic Sciences in Seattle offered the opportunity for the Bank to recruit medical examiners to assist the Bank in identifying individuals with autism spectrum disorders (ASD) and normal children who are so vital to research on identifying the underlying mechanism of ASD. Eight medical examiners agreed to inform the Bank of cases of interest so that the Bank could contact the family for consent. A significant number of additional attendees visited the booth and talked with the staff about brain and tissue donation. The meeting was attended by Ron Zielke.

seattle meeting

Dateline BTB - Archive  

(NICHD contract #HHSN275200900011C, Ref. No. NO1-HD-9-0011)