Aberrant behaviors, i.e. self-injury, aggression, and stereotyped behavior, are some of the most devastating neurodevelopmental disorders (ND). They lead to deteriorating health and, sometimes, early death;they prevent community integration;they impair learning and socialization opportunities;and they are the most salient reason for job failure in the community. They are often linked to several gene-brain-behavior dysfunctions. Prevalence estimates of ND in the U.S., UK, and Europe average c.10% in total population studies. Among all people with ND, prevalence studies in these countries estimate approximately 10-25 % have severe aberrant behaviors, but prevalence is unknown in Latin American countries. Extensive research on behavioral and psychopharmacological treatment and prevention exists, but not in Latin America, where this population is severely underserved. This project aims to study the development and prevention of aberrant behaviors of people with ND in Peru (population 22 million), where only 2% of the population of an estimated 3 million people who have ND are being served. The Centro Ann Sullivan Center del Peru (CASP) is a state-of-the-art school for neurodevelopmental disorders based in Lima, with a network of satellite programs in Peru, Argentina, Brazil, Bolivia, Colombia, Guatemala, Nicaragua, Ecuador, and Spain. CASP has a 27-year history of collaborative sponsorship with the Life Span Institute at the University of Kansas In response to Fogarty PAR-08-113, we propose an R21 to screen 1000 infants and toddlers expecting to find 250 who are at risk for ND, 6-36 mos., 50% of whom are also likely to be at risk for aberrant behaviors (AB) and to follow 100 or more of them plus 100 or more matched controls with ND, but not at risk for AB, at 6- month intervals for 12 months with in-depth interdisciplinary evaluations involving pediatric, psychoeducational, behavioral, neurological, and genetic assessments, to see if they develop aberrant behaviors, as was shown in the U.S. by Berkson, et al.( 2002). The results of this early identification program will be followed by a 5-year R01 on early preventive intervention of aberrant behavior in infants and young children with ND in Lima, Peru. The R21 will also concentrate on building on the existing excellent psycho-educational program and distance learning network at CASP by adding research infrastructure, increasing the research capacity of staff, translation and validation of assessment instruments, and collaborations with appropriate investigators in universities in the U.S., Peru, and other Latin American countries, who will then participate in the subsequent R01. There may be differences in the development of aberrant behavior due to sociocultural practices and health issues, such as uncontrolled environmental pollution, in Latin America.

Public Health Relevance

This project concerns the gene-brain-behavior relationships involved in the development of aberrant behaviors among infants and young children with neurodevelopmental disorders (ND) who live in high-risk environments in Lima, Peru. We plan to develop a risk algorithm that will permit a cost-effective effort at early preventive intervention that can be replicated throughout Latin America, across the CASP distance learning network and beyond, for young children with these extremely debilitating problems.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Exploratory/Developmental Grants (R21)
Project #
Application #
Study Section
Special Emphasis Panel (ZRG1-ICP2-B (51))
Program Officer
Krotoski, Danuta
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
University of Kansas Lawrence
Organized Research Units
United States
Zip Code
Schroeder, Stephen R; Richman, David M; Abby, Layla et al. (2014) Functional Analysis Outcomes and Comparison of Direct Observations and Informant Rating Scales in the Assessment of Severe Behavior Problems of Infants and Toddlers At-Risk for Developmental Delays. J Dev Phys Disabil 26:325-334
Schroeder, Stephen R; Rojahn, Johannes; An, Xiaozhu et al. (2014) The Parental Concerns Questionnaire: A Brief Screening Instrument for Potentially Severe Behavior Problems in Infants and Toddlers At-Risk for Developmental Delays. J Dev Phys Disabil 26:237-247
Schroeder, Stephen R; Marquis, Janet G; Reese, R Matthew et al. (2014) Risk factors for self-injury, aggression, and stereotyped behavior among young children at risk for intellectual and developmental disabilities. Am J Intellect Dev Disabil 119:351-70
Rethmeyer, Jasmine A; Tan, Xiaoyu; Manzardo, Ann et al. (2013) Comparison of biological specimens and DNA collection methods for PCR amplification and microarray analysis. Clin Chem Lab Med 51:e79-83
Butler, Merlin G; Usrey, Kelly M; Roberts, Jennifer L et al. (2013) 20q13.2-q13.33 deletion syndrome: A case report. J Pediatr Genet 2:157-161
Medeiros, Kristen; Curby, Timothy W; Bernstein, Alec et al. (2013) The progression of severe behavior disorder in young children with intellectual and developmental disabilities. Res Dev Disabil 34:3639-47
Rojahn, Johannes; Schroeder, Stephen R; Mayo-Ortega, Liliana et al. (2013) Validity and reliability of the Behavior Problems Inventory, the Aberrant Behavior Checklist, and the Repetitive Behavior Scale-Revised among infants and toddlers at risk for intellectual or developmental disabilities: a multi-method assessment approach. Res Dev Disabil 34:1804-14
Schroeder, Stephen R; Courtemanche, Andrea (2012) Early Prevention of Severe Neurodevelopmental Behavior Disorders: An Integration. J Ment Health Res Intellect Disabil 5:203-214
Mayo-Ortega, Liliana; Oyama-Ganiko, Rosa; Leblanc, Judith et al. (2012) Mass Screening for Severe Problem Behavior among Infants and Toddlers In Peru. J Ment Health Res Intellect Disabil 5:246-259