URMC Tapped to Advance Research in Intellectual and Developmental Disabilities

Jul. 8, 2020

The University of Rochester has been designated an Intellectual and Developmental Disabilities Research Center (IDDRC) by the National Institute of Child Health and Human Development (NICHD).  The award recognizes the Medical Center’s national leadership in research for conditions such Autism, Batten disease, and Rett syndrome, will translate scientific insights into new ways to diagnose and treat these conditions, and provide patients and families access to cutting edge care.

The IDDRC at the University of Rochester will be led by John Foxe, Ph.D., director of the Del Monte Institute for Neuroscience, and Jonathan Mink, M.D., Ph.D., chief of Child Neurology at Golisano Children’s Hospital.  The designation is accompanied with more than $6 million in funding from NICHD.

“The new center will span research from molecule to mind and elevate and accelerate the pioneering work that our scientists and clinicians are undertaking in this field,” said Foxe.  “This recognition will enable us to not only strengthen and expand the scope of research, but also attract new scientists, clinical researchers, and students, and accelerate the process of moving discoveries from the laboratory bench to the clinic in the form of new therapeutics and interventions.”

“Improving the health and wellbeing of people with intellectual and developmental disabilities has long been one of the core missions of URMC and is woven into our history dating back to the founding principles of the School of Medicine and Dentistry and the creation of the biopsychosocial model, which revolutionized the approach to complex physical and mental conditions,” said Mink.  “This designation will build upon this foundation and help improve the lives of patients with these conditions.”

URMC will be one of 14 NICHD-designation IDDRC institutions in the U.S. Combined with previous awards as a University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) and Leadership Education in Neurodevelopmental and Related Disabilities (LEND), this designation places the Medical Center among a small group of institutions recognized for their leadership in IDD research, training, care, and community partnership.

The IDDRC’s research will be closely integrated with the Medical Center’s Developmental and Behavioral Pediatrics, Child and Adult Neurology, Child and Adolescent Behavioral Health and Wellness, and the Complex Care Center clinical programs, which provide care for children and adolescents with a variety of neurodevelopmental and neurobehavioral conditions.  The IDDRC will also occupy space in the recently opened Golisano Behavioral Health and Wellness Building to conduct clinical research, allowing patients and families in the region access to the most recent scientific advances.

The University of Rochester IDDRC consists of five research clusters that collectively will advance science in the field and enable a better understand the genetic, environmental, nutritional, social, and molecular mechanisms of these conditions. These clusters are comprised of 105 investigators with 197 current or pending research projects. Researchers will work in collaboration the URMC Clinical and Translational Science Institute to quickly move new discoveries into clinical trials. 

While IDDRC will encompass a wide range of conditions, one of the key projects will focus on Batten disease.  The Medical Center is home to the University of Rochester Batten Center (URBC), one of the nation’s premier centers dedicated to the study and treatment of this condition.  With several potential gene therapies for Batten disease currently in advanced stages of development, URMC will focus on identifying biomarkers to help evaluate the effectiveness of these experimental treatments.   URBC is designated a Center of Excellence by the Batten Disease Support and Research Association (BDSRA).  

“Batten disease can be very aggressive and it is devastating for families to watch the slow regression of skills in their children and to live every day knowing that the disease is terminal,” said Tauna Batiste, Executive Director of BDSRA. “Partnering with organizations like the University of Rochester to push the science forward changes the experience from one that’s really hopeless to one that has some measure of comfort. Research is equal to hope for us.”

The IDDRC award is the culmination of a five-year expansion of the Del Monte Institute for Neuroscience, which has included the recruitment of 40 new scientists, many of whom have research programs and interests in the field of IDD, investments in complex care clinical infrastructure, more than $20 million in investment in new research facilities and capabilities, and the development of new research initiatives that represent the breadth of basic, translational, and clinical research for these conditions.