Collaborating Institutions

A multi-center alliance, the National Brain Gene Registry Project combines the expertise and resources of leading academic, hospital, and government research entities. Here is a guide to the alphabet soup of acronyms.

Lead Sites

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Washington University Logo
University of North Carolina Logo

Recruitment Sites & Principal Investigators

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In the first phase of patient enrollment, 13 IDDRCs will serve as Recruitment Sites. These centers are all part of the network of the National Institutes of Health (NIH) The Eunice Kennedy Shriver Intellectual & Developmental Disabilities Research Centers (IDDRCs), located at universities and children’s hospitals throughout the United States. The program supports researchers whose goals are to advance understanding of a variety of conditions and topics related to intellectual and developmental disabilities (IDDs).

Please use the Enrollment Inquiry Form for all questions about study participation.

Albert Einstein College of Medicine >
Melissa Wasserstein, MD

Baylor College of Medicine >
Michael F. Wangler, MD

Boston Children’s Hospital/Harvard Medical School >
Mustafa Sahin, MD, PhD
(BCH is not recruiting at present.)

Children’s Hospital of Philadelphia >
Kosuke Izumi, MD, PhD

Children’s National Hospital >
Andrea Gropman, MD

Kennedy Krieger Institute >
Constance Smith-Hicks , MD, PhD

UC Davis Mind Institute >
Suma Prabhu Shankar, MD

Gene Curation Collaborator

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ClinGen advisers support and collaborate with the BGR Gene Curation Team. ClinGen provides resources to enable the sharing of genetic and health data by patients, clinicians, laboratories, and researchers. This data is curated using ClinGen tools in order to capture information about a gene’s associations or causal relationships with specific diseases and physiological mechanisms. This information is made publicly available, building a genomic knowledge base with the goal of improving patient care through genomic medicine.

Founded in 2013 by the National Human Genome Research Institute, ClinGen is a growing collaborative effort, involving three grants, nine principal investigators and over 1,500 contributors from more than 35 countries, pooling their efforts and knowledge to define the clinical relevance of genes and variants for use in precision medicine and research.

Erin Rooney Riggs, MSc, CGC
Taylor Bingaman
Julian Savatt MS, LGC

Funding Partner

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Funding for the National Brain Gene Registry is provided by CTSA grant number 1U01TR002764-01A. The National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH) was officially established in 2012 to transform the translational science process so that new treatments and cures for disease can be delivered to patients faster. NCATS, one of 27 Institutes and Centers at NIH, strives to develop innovations to reduce, remove or bypass costly and time-consuming bottlenecks in the translational research pipeline in an effort to speed the delivery of new drugs, diagnostics and medical devices to patients.