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Institute for Basic Research in Developmental Disabilities |
1050 Forest Hill Road
Staten Island, New York 10314-6330
Phone: (718) 494-0600 & (718) 494-5117
Fax: (718) 494-0833
W. Ted Brown, M.D., Ph.D., Director
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Brief Description of the Facility |
The Institute for Basic Research in Developmental Disabilities (IBR) is the research arm of the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD). IBR conducts basic and clinical research into the causes, treatment, and prevention of mental retardation and other developmental disabilities. It also provides specialized diagnostic and consultative services to individuals with developmental disabilities and their families, and educates the public and professionals regarding the causes, diagnosis, prevention, and treatment of developmental disabilities.
The goals of IBR’s research, service, and education programs are to provide for prevention, earlier detection, and improved treatment of mental retardation and other developmental disabilities.
IBR’s research program currently consists of 7 departments and 45 laboratories. Service programs include the George A. Jervis Clinic, a tertiary-level diagnostic and research clinic; the Specialty Clinical Laboratories, which conduct specialty testing for a variety of genetic, metabolic, and neurodegenerative disorders; and the Comprehensive Genetic Disease Program at Richmond County, which provides genetics and genetic counseling services. Among the Institute’s educational activities is a graduate studies program, the Center for Developmental Neuroscience and Developmental Disabilities, which is conducted in collaboration with the City University of New York. IBR staff regularly conduct public education workshops and professional seminars about developmental disabilities.
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List of Programs and Services with Access Point Information |
George A. Jervis Clinic
Karen Amble, CSW
Phone: (718) 494-5126 or 494-5313
Fax: (718) 494-2258
Fragile X Center
W. Ted Brown, M.D., Ph.D.
Nancy J. Zellers, M.S.
Phone: (718) 494-5369
Fax: (718) 494-5336
Comprehensive Genetic Disease Program at Richmond County
Milen T. Velinov, M.D., Ph.D.
Phone: (718) 494-5221
Fax: (718) 494-1072
Infant Development Follow-up Program
Judith M. Gardner, Ph.D.
Phone: (718) 494-5178
Fax: (718) 494-5395
Batten Disease Registry
Milen T. Velinov M.D.
Edie Dockter, Adm. Asst.
Phone: (800) 952-9628
Fax: (718) 982-6346
Specialty Clinical Laboratories
Edmund C. Jenkins, Ph.D.
Phone: (718) 494-5345
Fax: (718) 494-0694
Brain Bank for Developmental Disabilities and Aging
Jerzy Wegiel, V.M.D., Ph.D.
Phone: (718) 494-5231
Fax: (718) 494-4856
Center for Aging Studies
Arthur J. Dalton, Ph.D.
Phone: (718) 494-5309
Fax: (718) 494-0736
Center for Developmental Neuroscience and Developmental Disabilities
Robert L. Freedland, Ph.D.
Diane Cocozza, Adm. Asst.
Phone: (718) 982-3950
Fax: (718) 982-3953
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Research Departments |
Developmental Biochemistry
Charles Isaacs, Ph.D., Acting Chair
Phone: (718) 494-5255
Developmental Neurobiology
Jerzy Wegiel, V.M.D., Ph.D., Chair
Ausma Rabe, Ph.D., Co-Chair
Phone: (718) 494-5231
Human Genetics
W. Ted Brown, M.D., Ph.D., Chair
Edmund C. Jenkins, Ph.D., Co-Chair
Phone: (718) 494-5363
Infant Development
Judith M. Gardner, Ph.D., Chair
Phone: (718) 494-5178
Molecular Biology
Yu-Wen Hwang, Ph.D., Acting Chair
Phone: (718) 494-5186
Neurochemistry
Khalid Iqbal, Ph.D., Chair
Mazhar N. Malik, Ph.D., Co-Chair
Phone: (718) 494-5259
Psychology
Ira L. Cohen, Ph.D., Chair
Phone: (718) 494-5181
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Discoveries |
Scientists at IBR have developed an international reputation for their discoveries that help prevent mental retardation and other developmental disabilities:
Phenylketonuria (PKU) -- Dr. George Jervis, the first director of IBR, discovered the genetic and biochemical defects that lead to PKU, a cause of severe mental retardation. Dr. Jervis' discovery led to the development of a special diet that prevents or alleviates mental retardation in individuals affected by PKU. This finding also led to the development of newborn screening programs now universally used to detect PKU and other genetically determined diseases.
Fragile X Syndrome -- IBR scientists first developed prenatal diagnostic tests as well as rapid PCR-based tests for fragile X syndrome, the most common inherited cause of mental retardation. These tests allow screening of family members of known carriers of the syndrome to determine if they are likely to have a child with fragile X.
Batten Disease -- IBR scientists developed the first non-invasive diagnostic test for the late-infantile and juvenile forms of this group of rare genetic, neurodegenerative disorders characterized by brain damage and deterioration.
Fetal Alcohol Syndrome -- IBR investigators developed a test to detect chronic alcohol use in pregnant women. This test will permit the detection and prevention of fetal alcohol syndrome, a cause of severe mental retardation.
Prenatal Cocaine Exposure -- IBR scientists discovered some signs of prenatal exposure to cocaine. Early intervention with these infants will help prevent the decline in mental development by two years of age that may result from cocaine exposure.
Taurine -- IBR researchers discovered that taurine, a compound present in human milk (but not in cow's milk, from which most infant formula is made), is essential for normal brain development. Thus, infants who were not nursed, especially premature babies, were at risk for experiencing developmental delays. IBR patented this discovery, and now, all government-approved infant formulas include a taurine additive. The patent has brought millions of dollars to the state of New York.
Autism -- Studies at IBR have demonstrated that a sizable percentage of individuals with fragile X syndrome have autism and that brain protein abnormalities are present in autism. Other IBR research projects have led to development of a more refined diagnostic tool for use in clinical and research settings and have revealed that in families with a strong history of major depressive disorder, the children with autism have higher, not lower, IQs than children with autism in families with no such history.
Monoclonal Antibodies -- IBR scientists have developed and patented monoclonal antibodies that are useful for the diagnosis, treatment, and study of neurological diseases and developmental disabilities, such as Down syndrome (DS), Alzheimer disease (AD), Batten disease, and fragile X syndrome.
Alzheimer Disease -- IBR was one of four leading laboratories to pinpoint the gene for ß-amyloid precursor protein, which causes AD, to chromosome 21, helping to explain the early occurrence of AD-type lesions in older persons with DS, or trisomy 21. Scientists here also developed the first test-tube model of the lesions that cause dementia in AD, which opens new avenues for diagnosis and for testing drug therapies. IBR is the coordinating center of a large international drug therapy trial to prevent AD in DS.
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Recognition |
IBR scientists and staff have received many awards for their contributions to the fields of developmental disabilities and the neurodegeneration that is associated with aging in individuals with developmental disabilities.
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Research and Educational Programs |
Publications-- IBR scientists publish approximately 100 papers in leading, peer-reviewed scientific journals each year.
Conferences -- IBR has sponsored international and regional conferences for families and research, health care, and education professionals in the following fields:
The Comprehensive Genetic Disease Program at Richmond County is an outreach program of IBR established in 1984. Board-certified medical geneticists and genetic counselors offer evaluations for individuals at risk for genetic or congenital disorders or developmental disabilities as well as prenatal and pediatric testing and counseling.For further information, please contact Milen T. Velinov, M.D., Ph.D., (718) 494-5221.
The Infant Development Follow-up Program conducts longitudinal testing of infants and children, with the aim of understanding the relation between central nervous system organization and developmental processes from the neonatal period to 8 years of age. The goal of the program is to better understand how difficulties in attention and arousal in high-risk neonates influence the development of perceptual, cognitive, motor, and autoregulatory systems, as well as how perinatal brain insults such as hypoxia or extreme prematurity, genetic/familial factors such as trisomy 21 or autism, and environmental teratogens produce abnormal growth and development. For further information, please contact Judith M. Gardner, Ph.D., (718) 494-5178.
The Batten Disease Center consists of a clinic, diagnostic laboratories, and a research program that address Batten disease, or the neuronal ceroid lipofuscinoses (NCLs), the most common neurodegenerative disorders of childhood, characterized by mental impairment, seizures, and progressive loss of sight and motor skills. The Batten Disease Registry collects data on all NCL cases in the United States and some foreign countries. For further information, please contact Milen T. Velinov, M.D., (718) 494-5219.
The Center for Aging Studies has as its primary mission the development, conduct, analysis, and reporting of multidisciplinary research into age-associated conditions affecting older individuals with intellectual and/or developmental disabilities. Among its activities are the conduct of an international, multicenter study of the effectiveness and safety of high-dose vitamin E in individuals with Down syndrome 50 years of age and older; the development of tests of cognitive abilities to evaluate changes associated with the onset of dementia, particularly in individuals with Down syndrome; and a collaboration with the State University of New York-University at Albany on an evaluation of residential settings for persons with dementia and developmental disabilities, an assessment of the nature of dementia care procedures, and surveys of the prevalence of dementia diagnoses in New York State facilities that provide services for older adults with developmental disabilities. For further information, please contact Arthur J. Dalton, Ph.D., (718) 494-5309.
The Center for Developmental Neuroscience and Developmental Disabilities (CDNDD) offers support to students pursuing a Ph.D. with a subspecialty in Neuroscience. The Center has been the centerpiece of OMRDD’s longstanding commitment to the educational training of, and support for, graduate students in Developmental Disabilities, Mental Retardation, and the Neurosciences. In its history, it has supported more than 100 students, with more than 33% working directly in the field of MR and DD, including six who are currently serving as Directors of support agencies.
The program, housed on the beautiful campus of the College of Staten Island (CSI), is designed to give students specialized knowledge related to Developmental Disabilities and Mental Retardation, within the domains of psychology, biology, chemistry, and other Neuroscience-related disciplines. Students are admitted to the program by the City University of New York (CUNY) Graduate School and University Center (365 Fifth Avenue, New York, NY 10016) and are encouraged to consult with Dr. Robert L. Freedland, CDNDD Director (718.982.3950; CSI/CDNDD, 2800 Victory Blvd., Bldg 6S - Room 229, Staten Island, NY 10314; freedland@mail.csi.cuny.edu), or associated CSI/CUNY faculty.