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IDDRC Celebrates 30 Years (And Counting) of Collaboration and Community
limjr [at] chop.edu (By Jillian Rose Lim)
Intellectual and developmental disabilities (IDDs) can touch on many aspects of a child's life, from their ability to learn or problem-solve to the delay of different systems in the body. To make big breakthroughs in how we can best understand and treat these wide-ranging disabilities, one concept is critical according to Michael Robinson, PhD, professor of Pediatrics at Children's Hospital of Philadelphia: Collaboration.
Alongside Robert Schultz, PhD, director of the Center for Autism Research (CAR), Dr. Robinson co-leads the Intellectual and Developmental Disability Research Center (IDDRC) at CHOP and the University of Pennsylvania, a nucleus for IDD research that serves as the foundation for such collaboration. For three decades — and in more ways than one — the IDDRC has provided what Dr. Robinson calls "the glue" uniting scientists across different disciplines. Working with researchers in genetics, developmental and behavioral pediatrics, neurology, psychiatry, biostatistics, and much more, the IDDRC enables cutting-edge IDD research by bringing the brightest scientific minds together with the latest innovations.
This year, the Center celebrated its 30th anniversary of continuous funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), a special milestone that its leaders can look back on with pride at what they have accomplished and what they hope is yet to come.
"Thirty years prior, there wasn't a structure to support collaboration between various disciplines," Dr. Robinson said. "The creation of the Center allowed us to start to shine a light on this group of brain-based disorders that require all of these disciplines to work collaboratively. We all know somebody, or know of somebody, who has one of these disorders, and the IDDRC exists to bring researchers to work together because they can learn from one another."
Supporting Collaboration With Cores
The IDDRC occupies a unique space in bridging disciplines for discovery, as its main function is to work with investigators who may need to use approaches that they are unfamiliar with to advance their research.
To this effect, the IDDRC currently supports the Administrative Core led by Drs. Robinson and Schultz, as well as five research "cores," or core facilities, that harness state-of-the art technologies in genetics and neuroscience. These include the Genomics and Data Integration core led by Marni Falk, MD, executive director of the Mitochondrial Medicine Frontier Program; the Biostatistics and Data Science core led by Mary Putt, PhD, ScD, professor of Biostatistics at Penn; the Neuroimaging and Neurocircuitry core led by Timothy Roberts, PhD, vice chair of Research in the Department of Radiology; the Preclinical Models Core led by Zhaolan (Joe) Zhou, PhD, professor of Genetics at Penn; and finally, the Clinical Translational core led by Dr. Schultz.
Together, the cores create a community of support that allows researchers to pursue research projects related to identifying the pathogenesis of different types of IDDs, determining how gene variants might alter brain or behavioral outputs, and developing novel treatments.
"The cores work together synergistically," said Dr. Schultz, providing complementary expertise and resources to facilitate IDD research. "Core services evolve, with new procedures and technologies added all of the time."
For example, the Clinical Translation core now offers a suite of artificial intelligence-driven tools for creation of computational behavioral biomarkers.
"In most cases, this process starts as a collaboration, and then that collaboration leads to new grant support," Dr. Robinson said. "There are easily 20 new NIH grants that were funded over the last five years that came out of this initiative. So, this mechanism hopefully provides a small amount of funding for a group of very talented people to work together with others to hopefully generate some exciting science."
The IDDRC also supports an innovative project that utilizes the center cores, "Early Predictors of Cognitive/language Development," led by Dr. Roberts. Using electrical signatures in the brain measured with magnetoencephalography, Dr. Roberts and his team have set out to determine whether they can develop predictors of language development and IQ in children at genetic risk for IDDs.
"If we can get a sense of risk of subsequent IDD diagnosis from genetics, we hope to use electrophysiological imaging to better inform families as to whether and, in some sense, how that risk is playing out during infant development," Dr. Roberts said. "The next step would be to target early intervention to ameliorate the risk. That's our aspiration."
Dr. Robinson added that another goal is identifying new biomarkers for IDDs.
"We need a biomarker for IDDs, just as we have for cardiovascular disease," Dr. Robinson said. "In cardiovascular disease, LDL cholesterol provides a biomarker to determine whether a drug is having a therapeutic effect. These biomarkers are not only predictive for the disease, but also have to be responsive to drugs that might bend the curve of disease. That's one of the things the IDD field desperately needs, and one hopes that with time, new biomarkers will be developed."
In addition to its cores, the IDDRC enables the advancement of IDD research in other important ways.
First, the Center hosts a robust training and development program for early-career scientists and trainees in the IDD community. With backgrounds in genetics, neuroscience, and other disciplines related to the IDD field, researchers in this program receive multidisciplinary training that helps them to become future leaders in IDD research.
"We've been a model in terms of both running and supporting the training program that's supported by the National Institutes of Neurological Disorders and Stroke," Dr. Robinson said. "By using CHOP resources that they've been generous to provide, we've been able to recruit faculty into the field and to bring them to the IDDRC."
Second, along with supporting the IDD community within CHOP and Penn, the IDDRC also promotes collaboration between external institutions. Alongside CHOP, the NICHD funds 15 other intellectual and developmental disability research centers — all of whom have strong research agendas that align with that of the IDDRC.
"We have a tremendous amount of resources, but with 2,000 different gene mutations that cause IDDs, even a place like CHOP is not going to have many patients with each individual mutation," Dr. Robinson said. "The network of intellectual and developmental disability research centers across the nation are going to have to work together around the genetics, and around developing appropriate ways to understand the pathogenesis of those disorders, and to be sure that the mutation is causing the disease."
Encompassing all of this is the fact that the IDDRC has acted — for 30 years and counting — as the strongest advocate for the continuing study of intellectual and developmental disabilities. This is most evident in the centers and faculty positions that have been born out of needs voiced by the IDDRC.
"The IDDRC became an organization that has been able to advocate with the leaders of CHOP for the creation of other centers," Dr. Robinson said. "For example, the IDDRC's prior leader, Marc Yudkoff, MD, and I wrote a letter indicating why the Center for Autism Research should be established, and that was then funded. We did the same for the creation of the Center for Mitochondrial and Genomic Medicine. The idea was to sort of bring in expertise in areas that we knew needed to be at CHOP in order to advance this field."
Looking to the Future
While technologies and concepts that were new 30 years ago are now commonly used in today's IDD research, Dr. Robinson said there is still much more to be done. One of the things Dr. Robinson most hopes for is to advance the scientific discipline forward by continuing to support a meeting of minds.
"We've been a model citizen for supporting collaboration and training development," Dr. Robinson said. "In this hyper-competitive, hyper-busy world, it's very hard to find time for people to work together. I think the biggest thing the IDDRC has done is provided some level of glue for all of these individuals to work together — all of whom were, you know, quite successful independent faculty members. We are very proud that they've all remain committed to the Center."
Learn more about the Intellectual and Developmental Disabilities Research Center at CHOP/Penn.