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Autism Information Center |
What is SEED?
SEED stands for the Study to Explore Early
Development. It is a 5-year, collaborative study being conducted in
six different populations of US children. SEED will help us better
understand the range of characteristics among children with and
without autism and other developmental disabilities and identify
what might put children at risk for autism spectrum disorders (ASDs)
and other developmental disabilities. It is being conducted by six
study sites that make up the Centers for Autism and Developmental
Disabilities Research and Epidemiology (CADDRE) Network. The CADDRE
Network was established and is supported by the US Centers for
Disease Control and Prevention (CDC).
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What does CDC mean?
CDC stands for the Centers for Disease Control and Prevention. CDC
is part of the United States Department of Health and Human
Services. Its mission is to promote health and quality of life by
preventing and controlling disease, injury, and disability. CDC
seeks to accomplish its mission by working with partners throughout
the nation and the world to
• monitor health,
• detect and investigate health problems,
• conduct research to enhance prevention,
• develop and advocate sound public health policies,
• implement prevention strategies,
• promote healthy behaviors,
• foster safe and healthful environments,
• provide leadership and training.
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What are the six CADDRE
centers?
The six CADDRE centers are:
• California CADDRE: Kaiser Permanente Division
of Research and the California Department of Health Services
• Colorado CADDRE: Colorado Department of Public Health and
Environment and the University of Colorado at Denver and Heath
Sciences Center
• Georgia CADDRE: the National Center on Birth Defects and
Developmental Disabilities, Centers for Disease Control and
Prevention
• Maryland CADDRE: Johns Hopkins University and Kennedy Krieger
Institute
• North Carolina CADDRE: University of North Carolina at Chapel
Hill
• Pennsylvania CADDRE: University of Pennsylvania School of
Nursing and The Children’s Hospital of Pennsylvania
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How were the CADDRE centers
selected?
Five sites were originally picked through an open competitive review
process in 2001 and funded for 5 years. The sites were selected
based on 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.
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What is autism?
Autism is one of a group of disorders known as autism spectrum
disorders (ASDs). ASDs are developmental disabilities that cause
substantial impairments in social interaction and communication and
the presence of unusual behaviors and interests. Many people with
ASDs also have unusual ways of learning, paying attention, and
reacting to different sensations. The thinking and learning
abilities of people with ASDs can vary—from gifted to severely
challenged. An ASD begins before the age of 3 and lasts throughout a
person's life.
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What are developmental
disabilities?
Developmental disabilities are a diverse group of severe chronic
conditions that are due to mental and/or physical impairments.
People with developmental disabilities have problems with major life
activities such as language, mobility, learning, self-help, and
independent living. Developmental disabilities begin anytime during
development up to 22 years of age and usually last throughout a
person’s lifetime.
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Where exactly is SEED being conducted?
California
a two county area: Alameda and Santa Clara counties
Colorado
the seven-county Denver metropolitan area: (Arapahoe, Adams,
Boulder, Broomfield, Denver, Douglas, and Jefferson counties).
Georgia (CDC)
the five-county metropolitan Atlanta area: Clayton, Cobb, DeKalb,
Fulton, and Gwinnett counties.
Maryland
seven jurisdictions in northeastern Maryland: Anne Arundel,
Baltimore, Carroll, Cecil, Harford and Howard Counties and Baltimore
City.
North Carolina
a ten county area: Alamance, Chatham, Davidson, Durham, Forsyth,
Guilford, Johnston, Orange, Randolph, and Wake counties.
Pennsylvania
three counties: Chester, Montgomery and Philadelphia counties.
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Why are we only looking at
children in 6 states?
The funding for the study allowed us to support 6 study sites around
the country.
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What is being investigated, and why?
SEED will focus on 3 main research areas of interest:
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Physical and behavioral characteristics of
children with autism, children with other developmental
disabilities, and children without a developmental delay or
disability noted - Autism is a complex disorder and we want
to better understand the full range of characteristics that are
associated with having autism. We also want to better understand
the characteristics of children without autism – both those with
typical development and those with other developmental concerns.
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Health conditions among children with and
without autism – We are interested in learning more about a
range of health conditions and disorders that might affect
children with and without autism. There have been a number of
smaller studies noting possible increases in some medical
conditions among children with autism and their families. SEED
provides an opportunity to compare children with autism, with
other developmental disabilities, and without a developmental
delay or disability on health conditions and health-related
issues, such as their sleeping and eating patterns.
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Factors associated with a child’s risk for
developing autism -- We hope the study 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 autism. The
risk factors may be related to genes, health conditions, and
other factors that affected the mother’s pregnancy, health and
developmental factors during the child’s infancy and first few
years of life, and the relationship between combined genetic and
non-genetic factors.
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Will the study include
vaccines as a potential risk factor for autism?
As part of SEED, we will collect some information on
childhood vaccines, in addition to the vaccines the mother received
during pregnancy. These will be assessed along with many other
possible factors, including environmental and genetic factors. It is
important to note that while SEED will provide information on
vaccine history, the study is not designed to comprehensively
collect and examine all potential vaccine questions.
It is too soon to speculate on the results of the
study. We hope the study will give us a better picture of the risk
factors that may be most important in causing autism.
Since there are already several studies, including
studies funded by the government, now looking at environmental
exposures in autism, we do not want to duplicate work and are using
SEED to look at broader categories of risk factors.
For more information on vaccines, please visit
http://www.cdc.gov/vaccines/.
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Why are we looking at other
developmental disabilities?
By comparing children with autism and children with other
developmental disabilities we will develop a better sense of whether
the physical characteristics, health conditions, and risk factors we
observe in children with autism are unique to autism or if they are
also important in children with other developmental problems.
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What are the other developmental disabilities
being studied?
We will be studying a range of other developmental disabilities,
including intellectual disability, developmental delay, and other
behavioral problems in early childhood.
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How many children will
be enrolled in SEED?
Altogether, the plan for SEED is to enroll 900 children in each of 3
groups: children with autism, children with other developmental
problems, and children drawn from the community most of whom are
typically developing. Thus, altogether, we hope to enroll 2700
children.
Georgia SEED plans to enroll an equal number of children as the
other 5 sites: 150 children in each of the 3 groups or 450 children
in all.
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In what way(s) will the
sample populations be representative of all children?
The two groups of children with autism and other developmental
problems will be identified in multiple clinical and educational
facilities in each community to ensure that the participants are
typicalof all children with these types of developmental problems -
and not just children who might be seen at a single clinic or
intervention program. The third group of study children will be
randomly selected from all children born in each community during
the same time period so that they aretypical of all children in the
study area, most of whom do not have developmental problems.
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How old are the children that
will be invited to participate in SEED?
SEED will include children between the ages of 2 and 5 years.
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Why are we only looking at children between
the ages of 2-5?
The study will focus on children who are 2 to 5 years old. This age
range was selected because we are interested in 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 born and
still living in certain areas. We are interested in learning about a
range of health-related events during their mother’s pregnancy and
their early life. Thus, we selected an age range that was fairly
young so that medical information is easier to retrieve and families
are less likely to have moved away from the study area.
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What will each study participant have
to do?
Each parent or caregiver will be asked to answer questions about
their child’s development and their family’s medical history. The
study clinicians will carry out a brief exam and developmental tests
on the child. Each parent and child will be asked to give samples of
blood, cells from inside the mouth, and a sample of the child’s
hair. Finally, we would request permission to access the mother’s
and the child’s medical records.
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What is the methodology for collecting
the data? Same for each state?
Yes, all the sites are using a common study protocol – meaning they
are following the same procedures for recruiting participants and
collecting data so that, at the end, the data from all 6 sites can
be pooled into a single large data base for analysis.
We will be asking participants to complete self-administered
questionnaires; interviewing mothers about pregnancy-related issues
and health and developmental conditions in their children;
conducting a developmental exam and a brief physical exam of each
study child, collecting cheek swab and blood samples from the
mother, father, and child; collecting a hair sample from the child;
and requesting permission to review the mother’s and child’s medical
records.
[Return to FAQ List]
How did Georgia SEED identify children to
invite to participate in this study?
We are working with our partners in the community who serve children
with developmental problems and 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 during 2003-2005 and living
in the five-county metropolitan Atlanta area: Clayton, Cobb, DeKalb,
Fulton, and Gwinnett counties.
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Is SEED considered a national study? Will
it give us national insight?
SEED is a multi-site study set in diverse communities in 6 locations
around the country: California, Colorado, Georgia, Maryland, North
Carolina, and Pennsylvania.
Although resources do not permit the sample to be drawn so that it
is statistically representative of all children in the nation, by
conducting the study in 6 different geographic areas across the
country with diverse populations and by identifying children from
multiple sources in each community we hope to have a study sample
that more closely represents children with autism and related ASDs,
other developmental problems, and typical development across the
country.
Compared to a study located in a single area, our study in six
different areas gives us geographic and community diversity that
will give us greater insights into the differences of who is at risk
and what are the risk factors for autism.
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When the study is completed, will we know
the causes of autism?
It is too soon to speculate on the results of the study. We hope the
study will give us a better idea of which of the risk factors that
we will be looking at seem to be important in causing autism. The
causes may be related to genes, the environment, or a relationship
between the two – such as if some groups of children with certain
genes are more easily harmed by some environmental exposures.
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Will this study find a prevention/cure for
autism?
It is too soon to speculate on what we might find about the causes
of autism. But, we are hopeful that the findings from SEED will help
the development of future studies specifically designed to assess
treatments among children with autism.
[Return to FAQ List]
Who can I contact for more information
about Georgia SEED?
Georgia CADDRE
National Center on Birth Defects and Developmental Disabilities
Atlanta, GA
404.498.0058
[Return to FAQ List]
I live in one of the other states with a
CADDRE center. Who can I contact for more information about the
study?
California CADDRE
Kaiser Permanente Division of Research
California Department of Health Services
Oakland, CA.
510.620.3700
Colorado CADDRE
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
Johns Hopkins University
Kennedy Krieger Institute
Baltimore, MD
877.868.8014
North Carolina CADDRE
University of North Carolina at Chapel Hill
Chapel Hill, NC
919.966.2068
Pennsylvania CADDRE
University of Pennsylvania School of Nursing
The Children’s Hospital of Pennsylvania
Philadelphia, PA
215.573.2469
215.590.7474
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Date:
August 05, 2008
Content source: National Center on Birth Defects and Developmental
Disabilities
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