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Intellectual and Developmental Disabilities Branch (IDDB)

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The IDDB sponsors research and research training aimed at preventing and ameliorating intellectual and related developmental disabilities. When the Institute was created in 1962 at the request of President John F. Kennedy and with the support of Congress, one of its primary charges was to encourage investigations of human development throughout the lifespan, with an emphasis on understanding intellectual and developmental disabilities (IDD). 

The mission of the IDDB is to support a program of research in IDD, including common and rare neuromuscular and neurodevelopmental disorders, such as Down, Fragile X, and Rett syndromes, inborn errors of metabolism, autism spectrum disorders, and conditions currently and soon-to-be detectable through newborn screening. The IDDB has a long and respected history of providing support for a diverse portfolio of research projects, contracts, training programs, and research centers dedicated to promoting the well-being of individuals with IDD at all stages of development.

New: Research Priorities​

Understand the Etiology of Intellectual and Developmental Disabilities (IDD)

Gap: At present, the IDD field is hindered by a lack of understanding of the etiology of IDD, especially with regard to genetic and epigenetic causes, and by a lack of knowledge on the interaction between genes and environmental exposures.

Priority: Interdisciplinary studies with an emphasis on the cellular, genetic, epigenetic, and environmental factors that contribute to the cognitive and behavioral manifestations of IDD, including (but not limited to) Down, Fragile X, and Rett syndromes, inborn errors of metabolism, and autism spectrum disorders.

Understand the Complexity of Comorbid Symptoms

Gap: To develop interventions for improving daily functioning and health in children and families with IDD, more knowledge is needed about the comorbid symptoms of these disabilities.

Priority: Support research on one or more comorbid conditions of IDD, including but not limited to: disordered sleep, self-injurious behaviors, obesity, gastrointestinal dysfunction, seizures/epilepsy, attention deficit/hyperactivity disorder, anxiety, depression, psychosis, and other mental health disorders.

Improve Screening and Early Diagnosis and Develop Early Interventions and Treatments

Gap: Evidence is needed to demonstrate that early screening and intervention can improve outcomes in IDD.

Priority: Encourage research on the development and/or implementation of new screening tests for the prenatal, newborn, and early childhood periods that assesses the efficiency and effectiveness of translating these tools into clinical care and the community setting.

Develop Appropriate, Valid Biomarkers and Preclinical and Clinical Outcome Measures

Gap: The field lacks valid and rigorous biomarkers and outcome measures for use in clinical trials related to IDD.

Priority: Establish the validity of biomarkers and outcome measures for IDD symptoms, severity assessments, and treatments, especially outcomes targeting cognitive (including language), behavioral (adaptive or maladaptive), social, and medical issues.

Natural History and Neurobiological and Behavioral Transitions

Gap: The natural history of many IDD conditions is poorly understood.

Priority: Support projects that examine transitional time periods of particular interest for IDD, including presymptomatic, adolescent to adulthood, middle adulthood to aging (prevalence of dementia in IDD populations), and causes of mortality in IDD.

Translational and Implementation Research

Gap: A lack of specific and effective treatments exists for many IDD conditions.

Priority: Promote the development, dissemination, and implementation of treatments for IDD that will impact clinical care and improve quality of life, including physiological, cognitive and behavioral manifestations, for those with IDD conditions.​

Contact Information

Name: Dr Melissa Ann Parisi
Intellectual and Developmental Disabilities Branch
Phone: 301-496-1383

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