202401 Intellectual and Developmental Disabilities Research Centers

​Program seeks Council approval for an initiative titled “Intellectual and Developmental Disabilities Research Centers (IDDRCs) 2025.” These Centers serve as a catalyst for intellectual and developmental disabilities (IDD)-related research across the institute and within NIH.

The IDDRCs have evolved since their inception in the 1960s into a network of collaborative centers, creating shared resources and a shared project to evaluate phenotypes and genetic causes associated with rare IDD conditions as well as establishing standards for induced pluripotent stem cell differentiation and brain organoid use and evaluation, among other network workgroups. There is a continued need for cutting-edge approaches to genomic and other ‘omics analyses, neuroimaging, model organism and cellular model generation and analyses, and complex cognitive and behavioral phenotyping to encourage clinical translational research that will lead to the generation of novel therapeutics and interventions for IDD conditions. In addition, the IDD field will benefit from efforts afforded by these centers to support the training and career development of the next generation of multi-disciplinary IDD researchers.

The goal of this initiative is to support integrated research centers that will provide core equipment and research infrastructure for IDD investigators as well as innovative translational research projects to move the field in an intervention and therapeutic direction while supporting research that informs these efforts. This new cycle of the centers program will also require a plan for enhancing diverse perspectives to increase the participation of investigators and research subjects with IDD conditions from under represented communities.

The research supported under the auspices of the IDDRC initiative is directly relevant to the following NICHD strategic plan themes:

  • Theme 1: Understanding the Molecular, Cellular, and Structural Basis of Development
  • Theme 4: Improving Child and Adolescent Health and the Transition to Adulthood
  • Theme 5: Advancing Safe and EffectiveTherapeutics and Devices for Pregnant and Lactating Women, Children, and Peoplewith Disabilities

In addition, this initiative is closely aligned with the NICHD Strategic Plan cross-cutting topic of health disparities and the goals of the NICHD STRIVE initiative as well as disease prevention.

The accomplishments of the IDDRC program over the past 10 years reflect its increasing function as a network rather than individual, siloed centers. There are now 14 active workgroups with membership from each of the centers that have developed specific projects related to these topic areas: clinical-translational science, induced pluripotent stem cells (iPSC)/brain organoids, animal behavior, DEIA, early career investigators, and communications. These groups are often led by the next generation of young scientists and have produced many valuable work products for the benefit of the IDD field, including standards related to rigor and reproducibility in animal models and brain organoids, several of which have been funded by NICHD-funded administrative supplements. One of the more formal joint and Network-wide partnerships is a CTSA-supported “Brain-Gene Registry” Collaborative Innovation U01 project that has engaged 13 of the funded centers to develop a registry of IDD subjects with standardized neurobehavioral phenotyping, curation of putative genes with pathogenic variants, and integration with EHR data, an effort which is informing the Clinical Genome resource curation of IDD-related genes.

A renewal applicationto continue this project with CTSA support has been submitted to NCATS. Many ofthe IDDRCs’ current activities include development of cutting-edge approaches to genomic analysis, neuroimaging, model organism generation and manipulation, and complex cognitive and behavioral phenotyping in novel and generative ways. In addition, they have served as training hubs for the next generation ofmulti-disciplinary IDD researchers. They have also developed fruitful partnerships with the HHS-funded University Centers for Excellence in Developmental Disabilities (UCEDDs) policy centers and HRSA-funded Leadership Education in Neurodevelopmental and Related Disabilities (LEND) training programs which are co-located at many IDDRC sites. Additional partnerships include those with NIH-funded networks such as the Rare Disease Clinical Research Consortia (RDCRC), Autism Centers of Excellence (ACE) networks and centers, and the INCLUDE Down syndrome program projects. Finally, in response to the COVID pandemic, several centers (Washington University, Kennedy Krieger Institute, University of Rochester) successfully competed for funding under the RADx-UP and Safe Return to School Diagnostic Testing Initiative, paving the way for vulnerable children with IDD to return to school using testing and mitigation strategies.

Plans for the next cycle will include an emphasis on more projects, fewer cores, and efforts to increase diversity of investigators and subjects. These changes will continue to move the IDDRCs in an intervention and therapeutic direction while supporting the basic science that will inform this translational transformation.

Program Contact

Alice Kau
Intellectual and Developmental Disabilities Branch (IDDB)

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