The NCS, or National Children’s Study, was authorized by Congress in 2000 as part of the Children’s Health Act. This study, unprecendented in size and scope in the United States, will seek to recruit hundreds of thousands of pregnant women to ultimately enroll and follow 100,000 children from gestation through adulthood. During the course of the study, parents and children will be studied carefully, with measures of behavioral, psychosocial and medical development tracked. This includes autism and autism spectrum disorders. Recent prevalence estimates suggest that around 1,000 children born to mothers enrolled in the study will develop ASD.
The overarching goal of the study is to examine how genetic and environmental factors affect child health and development. In addition to screening for autism spectrum disorders at 18 and 24 months, the current study protocol will collect multiple measures of genetic factors and environmental exposures, including specimens from mother, father and child at multiple times during development and adolescence, examination of environmental exposures, as well as medical information and medical events. The term environment is used broadly, and the study is very comprehensive in the frequency and specificity of examinations, as well as keeping in mind the magnitude and duration of a variety of exposures (medical, chemical, behavioral, psychosocial, demographic). Autism Speaks is currently working with the NCS to create a more developed and enhanced autism screening and diagnosis protocol, and identify solutions to clinical and ethical questions. This means that the NCS will be an instrumental tool for examining the relationship between genes and the environment and their relation to developmental disorders, including autism.
Because of the comprehensive nature of the study, families are expected to contribute a great deal. However, being enrolled in the NCS also provides an opportunity to contribute to a rich database of health information. This health information will be used to make policies on a statewide and federal level, identify possible intervention and treatment strategies for those enrolled, and provide participants with in depth evaluation and long-term follow up that they might not have received elsewhere. For the study to be successful, families should be willing to participate. Recruitment has already begun, and the study looks forward to talking to families who may be eligible to join – not just from those affected by autism, but those who are not affected. That means that your friends, family and neighbors could enroll even if you do not participate!!