(SACRAMENTO, Calif.) — The UC Davis MIND Institute has been named an Intellectual and Developmental Disabilities Research Center (IDDRC), through a prestigious grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health — a distinction held by only a handful of neurodevelopmental centers nationwide committed to the diagnosis, prevention, treatment and amelioration of developmental disorders such as autism, fragile X syndrome and Down syndrome.
Intellectual and Developmental Disabilities Research Centers conduct comprehensive interdisciplinary research that promotes the discovery and translation of basic science investigations into clinical applications. The designation will provide the MIND Institute with new tools to further strengthen its neurodevelopmental research across the schools, programs and departments of the entire university, cementing its stature as "the house that collaboration built," and knitting together the work of basic science researchers and clinicians to advance the development of new therapies for people with neurodevelopmental disorders.
There are only 15 IDDRCs nationwide. Others are situated at the Children's Hospital of Philadelphia, Children's Hospital of Boston and Children's National Medical Center in Washington, D.C. The MIND Institute IDDRC is funded through a five-year, $6.5 million grant.
"To be selected for the IDDRC program, an institution must meet rigorous scientific criteria," said Melissa Parisi, chief of the National Institute of Child Health and Human Development's Intellectual and Developmental Disabilities Branch. "We eagerly await the MIND Institute's contributions to the centers program and to intellectual and developmental disabilities research."
MIND Institute Director Leonard Abbeduto, Tsakopoulos-Vismara Endowed Chair in the Department of Psychiatry and Behavioral Sciences, directs the new center.
"Across its schools and colleges, divisions and programs, UC Davis has made a firm and lasting commitment to build better, healthier lives for children with neurodevelopmental disorders," Abbeduto said.
"Designation as an IDDRC gives the MIND Institute critical new resources that will allow it to advance its mission to speed transformation of basic scientific discoveries into clinical applications, in order to aide children and adults affected by neurodevelopmental disorders and their families worldwide and impact their lives today," he said.
The IDDRC co-directors are Judy Van de Water, an internationally known immunologist and professor in the Department of Internal Medicine who is highly respected for her innovative studies of the immune system and autism, and Tony J. Simon, a cognitive neuroscientist and professor in the Department of Psychiatry and Behavioral Sciences who is a world leader in research on chromosome 22q11.2 deletion syndrome (also known as Velocardiofacial or DiGeorge syndrome).
"The IDDRC designation is a game-changer for us," Van de Water said. "It will facilitate the MIND Institute doing really big science — more integrated and translational studies, using highly innovative research techniques. The IDDRC network will allow sharing these discoveries and technologies with our own researchers as well as with our sister IDDRCs around the country."
"The structure and themes of our new IDDRC will take the almost uniquely interdisciplinary interactions of the MIND Institute's clinicians and researchers to a whole new level,' said Simon. "The expertise of our Core leaders and users will create highly unusual combinations of behavioral and neuroimaging assessments along with further biological measures and the necessary integrative analytical expertise that will allow our teams to understand individuals with neurodevelopmental disorders more deeply than ever before, and this will accelerate progress towards targeted interventions and cures."
For example, one new proof-of-concept study will involve the MIND Institute's internationally respected research and patient-care expertise in fragile X-related disorders, with one team performing a clinical trial of targeted treatments — experimental medications — with another simultaneously providing a parent-implemented behavioral intervention program, which will be delivered via telemedicine.
Another team of collaborators will use a novel tool to measure the ongoing success of these approaches, by gauging study participants' ability to acquire and use language. Other researchers will explore the dysregulation of the fragile X mental-retardation 1 (FMR1) protein signaling pathway, the cause of fragile X-related disorders, examining the underpinnings of the condition. Internationally respected fragile X researcher and MIND Institute Medical Director Randi Hagerman is principal investigator for this multimodal treatment study.
"This treatment study demonstrates what the MIND Institute is and has always strived to be, a place that brings together basic science researchers studying immunology and genetics with physicians, psychologists and telehealth experts to help children and families," Hagerman said.
In addition to administrative core that will enhance the effectiveness of scientists conducting investigations through the IDDRC, there will be five scientific cores that will bring a wealth of resources to the new program:
The MIND Institute was founded only 16 years ago, spearheaded by six passionate and visionary families. They were determined to create a research institute where parents, community leaders, researchers, clinicians and volunteers would collaborate to study and treat the disorder and other neurodevelopmental conditions. They tirelessly fundraised and lobbied the university and the State of California to establish the institute in 1998.
"The designation is huge," said Sarah Gardner, a member of one of the MIND Institute's Founding Families who helped to establish the institute 16 years ago. "It speaks volumes about the people we have in that building – where their hearts, minds and souls are every single day when they walk through those doors."
"Would I like to be able to say that we have a cure for autism?' Gardner continued. "Yes. But I believe that we'll be able to do it."
The UC Davis MIND Institute in Sacramento, Calif., was founded in 1998 as a unique interdisciplinary research center where families, community leaders, researchers, clinicians and volunteers work together toward a common goal: researching causes, treatments and eventual preventions and cures for neurodevelopmental disorders. The institute has major research efforts in autism, fragile X syndrome, chromosome 22q11.2 deletion syndrome, attention-deficit/hyperactivity disorder (ADHD) and Down syndrome. More information about the institute and its Distinguished Lecturer Series, including previous presentations in this series, is available on the Web at http://mindinstitute.ucdavis.edu.
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