NICHD Focus Areas for Research in Intellectual and Developmental Disabilities

In April, 2012 NICHD held a workshop with leaders in the IDD field to identify key research areas, resources, and integration strategies needed to make advances in over the next 5 t o15 years. This led to the identification of five focus areas for reseach in IDD as outlined in its RFA-HD-15-033.  

1. Comprehensive –omic  Approaches

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

Example from the UMass Medical School (UMMS) IDDRC projects eligible for core usage:

Title: Hematopoiesis in Down Syndrome IPS Cells: Correction by Chromosome 21 Silencing
Principal Investigator: Jeanne Lawrence, Ph.D.

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.

Example from the UMMS IDDRC projects eligible for core usage:

Title: Home-Based System for Biobehavioral Recording of Individuals with Autism
Principal Investigator:  Matthew Goodwin, Ph.D.

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 disease-specific, and the potential to broaden to multiple IDD disorders is encouraged.

Example from the UMMS IDDRC projects eligible for core usage:

Title: A Family-Based Weight Loss Intervention for Youth with Intellectual Disability
Principal Investigator: Richard Fleming, Ph.D.

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.

Example from the UMMS IDDRC projects eligible for core usage

Title: Translational Analyses of Chronic Aberrant Behavior Across the Life Span
Project Investigator:  Louis Hagopian (Sub-project investigators: William Dube and William McIlvane)

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 pre-conceptional, prenatal, postnatal or childhood exposures or risk factors, and may involve the broader family or community.

Example from the UMMS IDDRC projects eligible for core usage:

Title: Improving Pregnancy Outcomes of Women with Intellectual and Developmental Disabilities
Principal Investigator: Monika Mitra, Ph.D.