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

EKS NICHD Priorities for IDD Research

Priorities for
IDD Research

NICHD funds a national network of IDDRCs through specialized research center cooperative agreements (U54 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 (a) cores that facilitate interdisciplinary and translational research in IDD, and that support IDD-related projects funded by other sources; and (b) at least one specific research project related to 1 of 5 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.

The missions of the IDD Branch at NICHD are broad and include research on the etiology, pathophysiology, epidemiology, diagnosis and evaluation, prevention, and treatment of 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, behavior, and biobehavioral studies in persons with IDD.

Five focus themes were identified as areas of research need in IDD by leaders in the field at the NICHD-sponsored workshop held April 2012. They are:

  1. Comprehensive –omic Approaches
    Comprehensive -omic 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. Outcome Measures 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.

  3. 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.

  4. Shared Resources Across IDDRCs for Treatment or Assessment
    Development of an assessment battery or clinical intervention for an IDD condition or group of IDD conditions that links more than one funded IDDRC into a network, with sharing of at least one unique core resource from each IDDRC.

  5. Public Health Approaches
    Public health approaches to IDD that identify potentially preventable, modifiable, or treatable targets that can yield a rich payoff in ameliorating or improving outcomes for large groups of individuals with IDD or that will reduce risk of developing an IDD. These may include preconception, prenatal, postnatal, or childhood exposures or risk factors, and may involve the broader family or community.

IDDRC Leadership