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The Eunice Kennedy Shriver NICHD BTB

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!

QUOTES IN THE NEWS

H. Ronald Zielke, Ph.D., Director of the NICHD Brain and Tissue Bank for Developmental Disorders, was recently quoted in several news publications.

NICHD BTB WORKSHOP

The NICHD Brain and Tissue Bank sponsored a Research Workshop July 16-17, 2012 in Rockville, MD entitled: “Contributions of Post-Mortem Tissue to the Study of Developmental Disorders – 20th Anniversary of the NICHD Brain and Tissue Bank for Developmental Disorders”

Researchers presented data on the rapidly changing gene expression during the first few years of life, on multiple studies on the Autism Spectrum Disorders, and additional studies on Down Syndrome, mitochondrial disorders, X-linked adrenoleukodystrophy, and hereditary DNA repair disorders. More information is provided at the links below:

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

DID YOU KNOW?

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

May 2013 – The IMFAR meeting in Donostia-San Sebastian, Spain was attended by nearly 2000 participants from around the world. Researchers at the meeting presented the latest findings related to Autism Spectrum Disorders (ASD). All areas of ASD related research were discussed including the complex phenotypic expression of ASD, intervention protocols, learning, genetics, physiology and pathology. ASD tissue from the NICHD Brain and Tissue Bank for Developmental Disorders continues to provide the basis of multiple research studies. Eight presentations by researchers from three continents relied on tissue from the NICHD BTB. These studies involved gene analysis, GABA receptors, neuron maturation, and mitochondrial biochemistry. Several researchers expressed an interest in obtaining human post-mortem tissue, including researchers using mouse models who wished to verify their findings in human tissue. Ron Zielke also discussed the issue of tissue banking with support group leaders and answered questions of family members with ASD. Although the NICHD BTB has a significant number of ASD brain donations in its inventory, the studies presented indicate the importance of increasing the number of donations, especially from children and individuals with ASD of any age who are less severely affected.

Dateline BTB - Archive

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