NICHD Research Priorities for Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers (IDDRCs)

NICHD funds a national network of IDDRCs through the P50 (Specialized Center) mechanism designed to advance the diagnosis, prevention, treatment, and amelioration of intellectual and developmental disabilities (IDD). An IDDRC has a multidisciplinary program of IDD research that includes 1) Cores that facilitate interdisciplinary and translational research in IDD and its dissemination, and that support IDD-related projects funded by other sources; and 2) at least one specific research project related to one of several focus themes identified as an area of research need in IDD.

The goals of the NICHD IDDRC program include the promotion of collaborative, multidisciplinary, and interdisciplinary research programs that will not only provide core facilities and support for research in IDD, but also will advance the development of therapeutics and interventions for these conditions. Another goal is to attract scientists to IDD research.

TThe priorities of the IDD Branch at NICHD are broad and include research on the etiology, pathophysiology, epidemiology, diagnosis and evaluation, prevention, and treatment or amelioration of IDD. IDDRC research covers a wide spectrum of scientific approaches ranging from laboratory research on fundamental processes of typical and atypical development to clinical, biomedical, behavioral, and biobehavioral studies in persons with IDD.

Focus themes have been identified as areas of research need in IDD by leaders in the field at the NICHD. They are:

1. Comprehensive –omic Approaches
   Comprehensive -omics approaches (e.g., genomic, transcriptomic, epigenomic, metabolomic) that will markedly increase our understanding of IDD conditions with no known etiology or IDD conditions with complex etiologies to improve diagnosis and, potentially, treatment.

2. Development of Biomarkers or Assessment Measures in More than one IDD Condition
   Development of a biomarker, assessment measure, or clinical intervention for more than one IDD condition or a group of related IDD conditions that share a common feature or metabolic or molecular pathway.

3. Outcome Measures or Biomarkers for Interventions or Treatments
   Development of preclinical or clinical outcome measures or biomarkers for the cognitive and/or behavioral phenotypes of IDD that have the potential to demonstrate a change in response to intervention or treatment.

4. Multi-Modal Treatment Approaches
   Development of bi- or multi-modal treatment approaches for a single IDD condition or a group of IDD conditions or spectrum disorders to demonstrate combinatorial effects to ameliorate a cognitive or behavioral symptom(s) of the condition(s). The interventions may or may not be disorder-specific, and the potential to broaden to multiple IDD disorders is encouraged.

5. Preventing and Mitigating the Impact of Exposures that Can Cause IDD
   Exposures of many types – medications, substances of abuse, infectious agents, environmental exposures, toxins – increase the risk of developing IDD. Therefore, therapeutic agents that can prevent or mitigate the risk of IDD following such exposures have the potential for broad clinical and public health impact. Exposures of interest may occur in the pre-conceptional, prenatal, postnatal or childhood period, and may involve the broader family or community.

6. Interventions and Management of Co-morbid Mental Health Conditions
   Many children and adults with IDD are diagnosed with behavioral or mental health conditions in the absence of assessment tools appropriate to IDD populations, and psychotropic medications are often administered to individuals with IDD, without an adequate understanding of their potential interactions and associated safety risks. Research that includes individuals with IDD who are on multiple psychotropic medications and novel interventions that go beyond traditional behavioral management of symptoms are encouraged.

7. Innovative Technologies to Improve Assessments, Interventions, and Outcomes for Those with IDD
   There has been an explosion of new technologies aimed at assessing and improving health, including wearable devices, communication aids, robotics and e-textiles. There have also been enormous advances in technologies that were not created for health-related purposes, but that have potential applicability to health assessments and interventions, including mobile device applications (“apps”) and social media platforms. Most of these technologies were originally developed for use in adults, particularly those with typical development, so there is a need for valid and reliable technological tools and adaptive devices for those with IDD.