Advances in clinical laboratory testing have increased our ability to detect genetic causes of developmental and psychiatric conditions, including autism, intellectual disability, epilepsy, and schizophrenia. Unlike the well-described genetic syndromes of the past, however, very little is known about many of these newly-identified causes, apart from their connection to DBD. In 2016, Geisinger ADMI led an international effort to create a multi-site Genome-to-Brain Network (G2B) aimed at standardizing and accelerating the clinical characterization of rare genetic causes of DBD, keeping pace with the rapid rate of gene discovery. Like ADMI, other centers involved in the G2B include multidisciplinary clinical and research teams experienced in the neurological, genetic, and psychological evaluation of DBD.
Since its initial meetings, G2B participants have reached consensus on a standardized set of assessments that can be incorporated into clinical care and shared, with patient consent, in a de-identified manner for research purposes. G2B sites have begun integrating this assessment battery into clinic workflows while making continued progress toward harmonizing consent forms, executing data-sharing agreements, and establishing a centralized G2B data repository. Ultimately, the G2B aims to fuel breakthroughs in the treatment of DBD by creating a cost-effective and continuously-expanding data resource linked to a network of researchers and motivated families. To learn more about the G2B, contact Emily Palen, MS, Project Coordinator, at email@example.com.
- Brown University
- Cambridge University
- Cardiff University
- Emory University School of Medicine
- Geisinger ADMI
- Hospital of the University of Pennsylvania
- Kennedy Krieger Institute
- McGill University
- National Institute of Mental Health
- University College London
- University of Montreal
- University of Texas at Austin
- University of Washington
- Washington University in St. Louis