We were asked by a participating institution to develop a website for a new national brain gene registry to be located at Washington University School of Medicine in St. Louis. There were four participating institutions involved in this initiative. We worked with Boston Children’s Hospital and the Washington University in St. Louis, School of Medicine to design and develop the website.
The National Brain Gene Registry is a highly collaborative initiative. They aim to better understand the impact of rare gene variants in intellectual and developmental disabilities, with the vision of improving the lives of individuals and families touched by these conditions. They invite researchers, patients and families to join us in this ambitious endeavor.
Led by investigators at Washington University in St. Louis, Harvard Medical School/Boston Children’s Hospital, and the University of North Carolina, the National Brain Gene Registry is funded by the NIH’s National Center for Advancing Translational Sciences. Thirteen leading US research institutions are participating in this initiative, enrolling participants and contributing to this rich source of genotypic and phenotypic data.