The Institute for Basic Research in Developmental Disabilities (IBR) is a proud part of New York State’s long history of caring for its citizens with developmental disabilities. It was in the 1940s and 1950s that the idea of creating an institute dedicated to studies in mental retardation was first discussed. In 1958, enabling legislation was passed for the creation of the Institute for Research in Mental Retardation within the New York State Department of Mental Hygiene. Ground was broken for the Institute’s research tower in 1964, and when its first laboratories opened in 1968, IBR was the first large-scale institute in the world with the mandate to conduct basic and clinical research into the causes of mental retardation. IBR became part of OPWDD, then known as the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD) in 1979; a year later, it was renamed the Institute for Basic Research in Developmental Disabilities to reflect OMRDD’s broader focus on many developmental disabilities.
More than fifty years after IBR opened its doors, its mission has grown from solely conducting research in the developmental disabilities to also providing services and offering educational programs: in 1980, IBR’s George A. Jervis Diagnostic and Research Clinic opened, and since 1987, IBR has been providing educational, training and mentoring opportunities, and access to resources for neuroscience research and scholarship to over 130 graduate-level students through the Programs in Developmental Neuroscience and Developmental Disabilities.
The Institute for Basic Research in Developmental Disabilities serves New Yorkers with developmental disabilities and their families. We further the goals of the New York State Office For People With Developmental Disabilities by:
- Conducting research into the causes and manifestations of developmental disabilities.
- Developing methods to improve the diagnosis, prevention, and treatment of developmental disabilities.
- Providing specialized biomedical, psychological, and laboratory services to individuals with developmental disabilities and their families.
- Educating the public and professionals regarding the causes, diagnosis, prevention, and treatment of developmental disabilities.
Breakthroughs made at the Institute for Basic Research in Developmental Disabilities include:
Autism —Scientists at IBR have developed an important new rating scale called the Pervasive Developmental Disorder Behavior Inventory (PDD-BI) to assist in the assessment of children 1.5 to 12 years of age who have been diagnosed with autism or a PDD. The PDD-BI is now being used widely in 500 clinical, educational, and research settings to assist in diagnosis and treatment recommendations, and to assess the effectiveness of treatments. The National Institutes of Health is using this instrument in its clinical drug trials.
Phenylketonuria (PKU)—IBR’s first Director, Dr. George A. Jervis, discovered the genetic defect that leads to PKU, a cause of severe intellectual disability. This finding led to the development of a special diet that prevents intellectual disability in individuals who have PKU and of newborn screening programs now used universally to detect PKU.
Fragile X syndrome—IBR scientists first developed prenatal screening tests for this syndrome, the most common cause of intellectual disability and the most common known genetic cause of autism. They have pioneered the development of new, faster, less costly methods for screening and diagnosis of fragile X mutations, including prenatal testing. The research group led by former IBR Director Dr. Ted Brown was the first to demonstrate the significant association of fragile X syndrome with autism.
Taurine—IBR researchers discovered that taurine, an amino acid present in human milk but not in cow’s milk, is essential for normal brain development. Now, all government-approved infant formulas contain taurine.
Down syndrome (DS)— IBR clinicians and researchers identified the neuropathological changes that are responsible for the developmental functional deficits and neuropathology that are associated with accelerated aging and early-onset Alzheimer disease in people with DS.
Batten disease—IBR scientists developed the first noninvasive test for this group of rare genetic, neurodegenerative disorders.
Taf1 syndrome -- Dr. Gholson Lyon leads an international, interdisciplinary research team from more than 50 institutions. The group recently published its findings from its study of TAF1 syndrome, a rare and devastating disease which causes developmental delays, that could lead to the improved diagnosis of autism spectrum disorder. The study was published in Human Mutation, the official journal of the Human Genome Variation Society.