University of Rochester Intellectual and Developmental Disabilities Research Center

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The University of Rochester (UR) has a long and extraordinarily rich history of providing first-rate clinical services to persons with Intellectual and Developmental Disabilities (IDD), and in driving new discoveries through research that create increased opportunity for individuals with IDD to live their lives to the fullest of their potential. This proposed UR-IDDRC is founded upon a revolutionary philosophy of medicine, first introduced here at UR Medical Center by Profs. George Engel and Jon Romano in 1977: The Biopsychosocial Model. This simple, yet profound idea, that the person seeking treatment is not merely a product of their biology, but rather, is also an amalgam of their psychology and socio-economic circumstances, places the whole person in all their complexity at the center of medicine. If ever there was a population that deserves to be recognized and treated in this holistic humanistic manner, it is those with an IDD. This UR-IDDRC places persons with IDD at the center of our inclusive neurodiverse mission, and commits to providing excellence in our basic, translational and clinical research, with a singular focus on providing tractable clinical solutions for these individuals. In the pages of this program application, we describe the Center’s crucial scientific infrastructure, which supports four cutting-edge Cores that elevate and accelerate the work of our 105 UR-IDDRC investigators, providing the very latest available technologies and expertise with high efficiency and excellent cost-effectiveness. These Cores are: Human Phenotyping & Recruitment (HPR); Translational Neuroimaging & Neurophysiology (TNN); Cell & Molecular Imaging (CMI); and Animal Behavior and Neurophysiology (ABN). Through vigorous leadership and in close consultation with our UR-IDDRC community and the five key advisory committees that provide counsel to our Administrative Core (ADM), we articulate a set of five research foci that embrace key and established research strengths at our institution while also seeking to expand our program into important areas of concern to the larger IDD community. These are: (1) Rare and orphaned diseases of neurodevelopment; (2) Parental stress and early life exposure as determinants of brain development; (3) Neuroinflammatory mechanisms in pathological brain development; (4) Autism spectrum disorder; (5) Multisensory and sensorimotor integration. Some 202 ongoing IDD projects, and 9 associated training grants, are supported by this infrastructure, and the Center Leadership is committed to further growing this already thriving program by attracting and training new young investigators and clinicians in IDD research. Major efforts to disseminate the work of the Center through media outlets and culturally competent multilingual publications, oriented at our community, are in place. Outreach to our IDD community and the public at large is a central concern of the UR-IDDRC. Leveraging the enormous financial commitment of the University of Rochester’s leadership to developing the UR-IDDRC, and through a philanthropy-driven annual pilot grant fund of $400,000, UR-IDDRC leadership is strongly positioned to prosecute an innovative transformative IDD research agenda over the proposed five-year term of this program.