|
Ongoing Studies > The Carter Center |
Carter Center for Neurocognitive Research
The Carter Center for
Neurocognitive Research at the Center for Molecular and
Behavioral Neuroscience, Rutgers University, has been funded
by the Don
and Linda Carter Foundation for Brain Research into
Holoprosencephaly (HPE) and Related
Malformations since 1998 . For more information on the Foundation and
the other Carter Centers please click here.
HPE is a rare and serious developmental neurological disorder resulting from incomplete cleavage of the early fetal brain. Affected children typically have many associated medical problems, severe motor impairment, and few develop spoken language.
We have been developing the Early
Cognitive Assessment
Battery, a
prototype assessment battery that allows evaluation of
early cognitive and language development in nonverbal,
motor-impaired children, such as children with HPE.
In the development of this battery, we have introducing measures of time-locked cortical evoked potentials and use an automated system for tracking eye-gaze. In the future, we hope to adapt some of the techniques used in this assessment battery, and therefore suitable for this population, into adaptive intervention techniques.
As an extension of our current research, Dr. Hilary Leevers is conducting a questionnaire study of cognitive, social, and language development in children with HPE based in the UK. We continue to foster national and international collaboration in this important research area through the Carter Center Network, the Developmental Neurocognitive Research Consortium, and by encouraging further research into assessment and intervention for children with developmental disabilities. If you would like to learn more about HPE then try: · Cognitive and Social Development of Children with HPE - an article written for parents of children with HPE referred to the Carter Centers · Conference Handouts reporting on our research in this area Early
Cognitive Assessment Battery This prototype Early Cognitive Assessment Battery has been designed to allow evaluation of early cognitive and language development in nonverbal, motor-impaired children. There are two elements to the battery. First, in collaboration with the Clinical Carter Centers we have developed a scale to assess children's social, auditory, visual, and verbal skills up to a cognitive level of 24 months: the Carter Neurocognitive Assessment (CNA). The CNA consists of a series of graded items chosen to be appropriate for the population of children we study, and to allow a more fine-grained documentation of their developmental milestones ( Roesler, Flax, Leevers, Swann & Benasich 2001; Leevers, Roesler, Flax & Benasich, 2004). The CNA is intended to allow us to give families feedback regarding the developmental abilities of their children, to communicate with medical professionals about the developmental range and abilities of children with HPE (although the assessment could be used for any child with limited motor skills), and to monitor changes in developmental milestones. Although many standardized assessment tools have some items that are useful, the majority of items require good motor skills (particularly for the younger children) or expressive language (particularly for the older children). Thus, it is hard to generate normative scores (or age equivalents) from these scales, because children only have the potential to score on a limited number of items. In addition to creating the CNA, we have developed the Early Cognitive Assessment Battery that is administered here in our research facility. The goal of this battery is to assess fundamental processing abilities that underlie cognitive and language development. The information processing skills assessed have been found to be good predictors of cognitive and language outcomes in different populations of children, particularly children at high-risk due to premature birth or low socioeconomic circumstances (McCall & Carriger, 1993). As well as being predictive of children's potential language and cognitive outcome, there is evidence that such early processing abilities determine the extent to which children respond to intervention (Zelazo & Stack, 1997). In addition, a more specific association may exist between the early ability to process rapidly presented auditory information and later language skills. Early time-dependent information processing is assessed as well as children's ability to process information in the auditory, visual, and auditory-visual domains. A range of tasks is included that are designed to provide information about different skills: speed and efficiency of information processing, short- and long-term memory, learning of contingencies, executive function and inter-sensory integration. Some of the other tasks in our battery assess receptive language and phonological discrimination (using eye-gaze to objects) as well as response to environmental sounds. In addition, we are using converging paradigms including dense array EEG/ERP to examine brain waves to language and non-verbal sounds and visual stimuli and structural MRIs. A number of our new experimental tasks have segments that show promise for use in an intervention/remediation setting and we have begun to investigate computer applications that could interface with these tasks. Hopefully, the results of this battery can eventually be used to evaluate the effectiveness of treatment and intervention protocols. The Early Cognitive Assessment Battery as a “formal assessment” is not yet ready for general clinical use but selected families with children diagnosed as having lobar or semilobar holoprosencephaly (identified by the HPE Clinical Centers or ascertained locally) or early brain insult from other causes have been invited to participate in our ongoing longitudinal study. Research goals include the identification of candidate brain substrates for emerging abilities and correlation of neural abnormalities with behavioral outcomes. Questionnaire study of cognitive, social, & language development in children with Holoprosencephaly (HPE) The goal of this study is to provide a more accurate description of the skills that children with HPE can develop. When this research reaches the medical community it will be available for parents (particularly at diagnosis) so that they receive more accurate (and positive) information about their children's potential. An eventual goal of this research is to facilitate the development of intervention programs. Without accurate information on the skills that children with HPE can develop, it is hard to know what type and level of intervention can be beneficial. In recent years, there has been much research into HPE, including its possible causes and how best to treat medical complications. However, very little is known about the skills and abilities of children with HPE. We are interested in their social skills, their language development (especially, their understanding of what is said to them), and their cognitive development (that is, their understanding of and interaction with the world around them). In this study, parent and carers of children with HPE have been asked to complete a questionnaire about their children's development. This is a useful technique to use with children who tire easily, vary a lot from day to day, or whose understanding of the world is expressed in subtle ways. The questionnaire has been specifically designed for use with children with HPE and asks about key developmental skills, without assuming that children will have normally developing motor or spoken language abilities. The data collected will be used to compile a profile of what children with HPE can achieve. If there are enough respondents with children of varying ages, the data will be examined to look for changing performance with age and whether performance relates to diagnosis of type of HPE. Jing, H., Flax, J., Roesle, C., Choudhury, N., & Benasich, A.A. (In Press). "Auditory event-related responses in children with semi-lobar holoprosencephaly." Brain & Development. Roesler, C., Paterson, S.J., Flax, J., Hahn, J.S., Kovar, C., Stashinko, E., Jing, H., & Benasich, A.A. (under review) "Cognitive Profile of Children with Holoprosencephaly." Journal of Developmental and Behavioral Pediatrics. Handouts from recent
conference posters may be available for download in PDF
format. You must use Adobe®
Acrobat®
Reader to view or
print these files. Flax, J., Realpe-Bonilla, T. and Benasch, A.A. (2005) Language at Three: A Tool for Predicting Language, Phonological Awareness and Reading at Five and Seven. Presentation at American Speech, Language, and Hearing Association, San Diego, November. Roesler, C., Paterson, S., Flax, J., and Benasich, A. (2004) Cognitive Profiles of Children with Holoprosencephaly. Presentation at American Speech, Language, and Hearing Association, Philadelphia, November. Roesler, C., Flax, J., Leever, H., Benasich, A. (2003) Carter Neurocognitive Assessment: Evaluation of Young Children with Severe Language and Motor Deficits. Presentation at the American Speech, Language and Hearing Association, Chicago, IL. November. Flax, J., Mannix, M., Realpe-Bonilla, T., Paterson, S., Choudhury, N., Benasich, A. (2003) Language at Two Years: Can it Reliably Predict Later Language and Reading? Poster presented at the American Speech, Language and Hearing Association, Chicago, IL. November. National and international collaboration in this important research area is fostered through the involvement of top international and interdisciplinary research scientists who specialize in the area of developmental disabilities and brain function in conferences and workshops. The Developmental Neurocognitive Research Consortium, formed in 1998, has specifically encouraged research into the assessment of, and intervention for, children with developmental disabilities such as holoprosencephaly. Two formal meetings of the consortium have been held, the first in Ithaca, NY, October 1998, where a team of top international and interdisciplinary research scientists who specialize in the area of developmental disabilities and brain function convened. All members of the group united in expressing a desire to further research into assessment and intervention for children with developmental disabilities, not only in their own labs, but also by encouraging the research of others. A subset of scientists from the original meeting reconvened in London, UK, in October of 1999, to participate in a second workshop entitled: "Neurobiological Approaches to Assessment, Intervention and Remediation." The consortium members continue to encourage and promote interest in conducting research into the assessment of, and intervention for, children with a range of developmental disabilities including holoprosencephaly. These goals are kept in the forefront by discussing issues relating to such research during presentations at national and international conferences and at smaller tightly focused workshops.
Fostering Research into Developmental Disabilities: Developmental Neurocognitive Research Consor tium and Workshops
