CDC - SEED-FAQs, Autism Spectrum Disorders

California CADDRE: Kaiser Permanente Division of Research and the California Department of Health Services. The study takes place in Alameda and Santa Clara counties.
Colorado CADDRE: Colorado Department of Public Health and Environment and the University of Colorado at Denver and Heath Sciences Center. The study area is the Denver metropolitan area—Arapahoe, Adams, Boulder, Broomfield, Denver, Douglas, and Jefferson counties.
Georgia CADDRE: the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. The study area is made up of metropolitan Atlanta—Clayton, Cobb, DeKalb, Fulton, and Gwinnett counties.
Maryland CADDRE: Johns Hopkins University and Kennedy Krieger Institute. The study area includes Anne Arundel, Baltimore, Carroll, Cecil, Harford, and Howard counties and Baltimore City.
North Carolina CADDRE: University of North Carolina at Chapel Hill. The study takes place in Alamance, Chatham, Davidson, Durham, Forsyth, Guilford, Johnston, Orange, Randolph, and Wake counties.
Pennsylvania CADDRE: University of Pennsylvania School of Nursing and The Children’s Hospital of Pennsylvania. The study area is made up of Chester, Montgomery, and Philadelphia counties.

Why are we looking at children in only six states?
The funding for the study is enough to support only six sites around the country.

How were the CADDRE centers chosen?
Five sites were picked through an open competitive review process in 2001 and were funded for 5 years. The sites were selected based on peer review of the merit of their application. A sixth site was established at CDC. In 2006, CDC had a limited competitive review process and funded the sites for another 5 years.

What is being studied and why?
SEED is looking at three main areas:

Physical and behavioral characteristics of children with ASDs, children with other developmental disabilities, and children without a developmental delay or disability
ASD is a complex disorder. We want to learn more about why people with ASD are the way they are—how they behave, grow, think, and interact with the world around them. We also want to know the same things about children with other developmental disabilities and those with typical development.

Health conditions among children with and without ASDs
We are interested in learning more about the health conditions and disorders that might affect children with and without ASDs. Some smaller studies have shown that certain medical conditions seem to be found more often among children with ASDs and their families. SEED provides an opportunity to compare health conditions and health-related issues such as sleeping and eating patterns in children with ASD, in children with other developmental disabilities, and in children without a developmental delay or disability.

Factors associated with a child’s risk for developing ASDs
We hope that SEED will give us a better idea which of the many possible risk factors that we will be evaluating seem to be associated with or related to ASDs. The risk factors may be related to genes, health conditions, experiences of the mother during pregnancy, and the health and development of the child during infancy and the first few years of life.

Why are we looking at other developmental disabilities?
By comparing children with autism and children with other developmental disabilities, we will have a better sense of whether the physical traits, health conditions, and risk factors we find among children with autism are unique to autism or if they also are found among children with other developmental problems.

What are the other developmental disabilities being studied?
We will be studying intellectual disability, developmental delay, and other behavioral problems of early childhood.

How many children will be enrolled in SEED?
We plan to enroll 2,700 children. At each of the six CADDRE SEED sites, we plan to enroll 150 children in each of 3 groups: children with autism, children with other developmental problems, and children from the community whom are assumed to be developing normally.

How old are the children who will take part in SEED?
Children 2–5 years of age will be asked to take part in SEED.

Why are we looking only at children 2–5 years of age?
The study is limited to this age group because we want to study the early development of children with and without autism. Also, children in this age group will be more likely to be near the beginning of treatment if they are already participating in developmental intervention programs. Finally, we are focusing on children who were born in and still reside in certain areas. We are interested in learning about a range of health-related events during the mother’s pregnancy and the child’s early life. Thus, we selected a young age range so that families would be less likely to have moved away from the study area, and the children’s health information would be easier to find.

What will parents and children in the study be asked to do?
Parents or caregivers will be asked to answer questions about their child’s development and their family’s medical history. Children will have a brief physical examination and developmental testing by study clinicians. Each parent and child will be asked to give small samples of blood and cells from inside the mouth; a small sample of the child’s hair will be taken. Finally, we will ask to look at the mother’s and the child’s medical records.

How are data being gathered? Are they being gathered in the same way at each site?
All SEED sites are using a common study protocol. This means they are doing the same things at each site so that, at the end of the study, the data from all six sites can be combined into a single, large database that can be analyzed.

How did Georgia SEED pick children to ask to take part in this study?
GA SEED is working with partners in the community who serve children with developmental problems. Through these partners, we will be sending out letters to families to invite them to participate.

We are also working with the Georgia Department of Human Resources to recruit families with children born from 2003 through 2005 and living in the five-county metropolitan Atlanta area (Clayton, Cobb, DeKalb, Fulton, and Gwinnett counties).

Photo: Child raising arm

Is SEED a national study? Will the children studied represent all U.S. children?
SEED is a multisite study taking place in six states. CDC does not have funding to do a bigger study that would give a complete picture of the health of children nationwide. However, because this study is being done in six states across the country, we hope it will pretty closely represent children’s health in the rest of the country.

To increase the likelihood that the children studied represent all children, we will select children with autism and other developmental problems from a number of clinics and schools in the study areas. By using lots of different clinics and schools (and not just one or two), we can be sure that those chosen to take part will be representative of all children with these types of developmental problems and not just children who might be seen at a single clinic or school. The third group of study children (those without developmental disabilities) will be picked at random from all of the children born in each community during the same time period. This will ensure that they, too, are representative of all children in the study area, most of whom do not have developmental problems.

When the study is done, will we know the causes of autism?
It is too soon to know that. The goal of the study is to give us a better idea of which risk factors seem to be important in causing autism. The causes might be related to genes, the environment, or both.

Will this study find a way to prevent or cure autism?
At this time, we can’t answer this question. But, we hope that the findings from SEED will lead to future studies specifically designed to test treatments among children with autism.

Whom can I contact to learn more about Georgia SEED?
Georgia CADDRE
Aimee Anido
National Center on Birth Defects and Developmental Disabilities
Atlanta, GA
404-498-0058

I live in one of the other states with a CADDRE center. Whom can I contact to learn more about the study?

California CADDRE
Jack Collins
Kaiser Permanente Division of Research
California Department of Health Services
Oakland, CA
510-620-3700

Colorado CADDRE
Andria Ratchford
Colorado Department of Public Health and Environment
University of Colorado at Denver and Heath Sciences Center
Denver, CO
303-315-0066
303-692-2680

Maryland CADDRE
Tanisha Mitchell
Johns Hopkins University
Kennedy Krieger Institute
Baltimore, MD
877-868-8014

North Carolina CADDRE
Chyrise Bradley
University of North Carolina at Chapel Hill
Chapel Hill, NC
919-966-2068

Pennsylvania CADDRE
Lisa Young
University of Pennsylvania School of Nursing
The Children’s Hospital of Pennsylvania
Philadelphia, PA
215-573-2469
215-590-7474

For more information about this study, contact Georgia SEED via email at georgiaseed@cdc.gov or by phone at 404-498-0058.

DISCLAMER:

Your participation is voluntary. There are no penalties if you choose not to participate in all parts of the study. We value your participation; families are encouraged to complete all steps they are comfortable with. It is important for all invited families to take part so we can learn more about differences in child development. Your participation will help us look