This program, established 1 year after NICHD's founding, supports researchers whose goals are to advance understanding of a variety of conditions and topics related to intellectual and developmental disabilities (IDDs). NICHD's Intellectual and Developmental Disabilities Branch (IDDB) funds the program, which includes 15 research centers, located at universities and children's hospitals throughout the country.
Centers are encouraged to have cores to provide infrastructure support for IDD-relevant investigator projects, but they must also support a Clinical Translational Core to promote development of clinical applications from basic science discoveries. Centers must also support an entirely new research component project that uses the cores of the center and addresses one of the five themes identified at the 2012 workshop Charting a New Course for IDD Research, at which thought leaders from the IDD and affiliated communities formulated themes that represented new opportunities for IDD research over the next 5 to 15 years:
- Comprehensive "–omic" approaches to IDDs
- Outcomes measures for interventions or treatments
- Multi-modal treatment approaches
- Shared resources across IDDRCs for treatment or assessment
- Public health approaches to IDDs
Since the start of the new mechanism, centers have offered a variety of different research services through their cores, including bioinformatics and biostatistics; genomic, proteomic, and metabolomics facilities; cellular neuroimaging and optogenetic services; neuroimaging, including MRI, DTI, and spectroscopy; and animal and human behavioral testing. Specific research projects have included evaluation of animals and humans with ASDs, multimodal treatment studies in Fragile X syndrome, and studies of complementary treatments.
Many studies involve collaborations with researchers outside the program to leverage multiple funding sources. Although the centers differ in many aspects, including their scientific focus, size, lifespan, and history, they share a commitment to creating integrated research opportunities for investigators engaged in basic, clinical, and translational science related to IDDs.
Areas of research for center investigators have included:
- Chromosomal conditions that cause IDDs, such as Prader-Willi, Angelman, Williams, and Down syndromes
- Conditions identified by newborn screening associated with cognitive impairment
- X-chromosome disorders, such as Rett and Fragile X syndromes
- Disorders that involve biochemical processes and metabolic issues related to brain functioning, brain injury, or long-term consequences to the brain, such as hypoxia, very low birth weight, phenylketonuria, and prenatal malnutrition
- Biological or biochemical mechanisms that cause behavioral problems, such as, self-injurious behavior and impairments in language development
- Albert Einstein College of Medicine
- Baylor College of Medicine
- Children's Hospital Boston
- Children's Hospital of Philadelphia
- Children's Research Institute/Children's National Medical Center
- Hugo W. Moser Research Institute at Kennedy Krieger
- University of California, Davis
- University of California, Los Angeles
- University of Kansas, Lawrence
- University of North Carolina, Chapel Hill
- University of Washington
- University of Wisconsin, Madison
- Vanderbilt University Medical Center
- Washington University
- NICHD Contact: Melissa Parisi
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