Frequently Asked Questions
- What is SEED?
- What are the sites that are participating?
- Who can be in the study?
- Why is the study only looking at children between the ages of 2 1/2 and 5?
- I know someone who would be interested in signing up for this study. How can I refer them?
- My child doesn’t have autism. Why does the study want my family to participate?
- What are the other developmental delays being studied?
- Does this study involve treatment, intervention, or medication?
- Does my child have to have blood drawn? Do I have to do all the study activities?
- Where is the developmental assessment done?
- Will families get any results from the study tests?
- One of my child’s biological parents is unavailable. Can my child still participate?
- Can I get the study results?
- How do I know my family’s information is protected?
- Will the study include vaccines as a potential cause of autism?
- I have questions about my child’s development. Who can I call?
Answers
1. What is SEED?
The Study to Explore Early Development Phase II, or SEED II, is a five year, multi-site collaborative study that will help identify what might put children at risk for autism spectrum disorders (ASDs) and other developmental delays. It is being conducted by the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network, which includes six study sites, a data coordinating center, and a laboratory partner.
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2. What are the sites that are participating?
The SEED Study sites are being conducted by:
- California: Kaiser Permanente Division of Research and the California Department of Health Services
- Colorado: University of Colorado School of Medicine, Colorado School of Public Health, and the Colorado Department of Public Health and Environment
- Georgia: CDC's National Center on Birth Defects and Developmental Disabilities
- Maryland: Johns Hopkins University and Kennedy Krieger Institute
- North Carolina: University of North Carolina at Chapel Hill
- Pennsylvania: University of Pennsylvania School of Nursing and The Children's Hospital of Pennsylvania
The CADDRE Data Coordinating Center is operated by Michigan State University. The CADDRE Laboratory is operated by Johns Hopkins University.
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3. Who can be in the study?
Children who are invited to participate in the study must:
- Be born between January 1, 2008 and December 31, 2011 and be between 2 1/2 and 5 when they are in the study.
- Be born and still living in the Denver, Adams, Arapahoe, Jefferson, Broomfield, Douglas, or Boulder county.
- Be living with their biological mother.
- Child and mother must speak English or Spanish.
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4. Why is the study only looking at children between the ages of 2 1/2 and 5?
This age range was selected to reduce the amount of time since pregnancy and early development so that parents can remember the events during these time periods better, so medical information is easier to retrieve, so families are less likely to have moved away from the study area and so it will be near the beginning of treatment for children in developmental intervention programs.
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5. I know someone who would be interested in signing up for this study. How can I refer them?
If you know someone who meets the study eligibility criteria and is interested in learning more about the study you may have them call the Colorado SEED phone line at 303-724-7638 or email us at colorado.seed@ucdenver.edu. Families who refer themselves must have an eligible child who has a diagnosed Autism Spectrum Disorder or developmental delays involving communication and social skills.
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6. My child doesn’t have autism. Why does the study want my family to participate?
It is important that we work with a wide range of families in order to gain an accurate understanding of child development. For that reason we are asking all kinds of families to participate.
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7. What are the other developmental delays being studied?
We will be studying a range of other developmental delays including mental retardation, language delay, general developmental delay and other behavioral problems of early childhood.
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8. Does this study involve treatment, intervention, or medication?
No, this study does not include any type of medical treatment, intervention, or medication. We will be studying the characteristics of children and families to learn more about the causes of autism and other developmental delays. This may lead to better services and treatments for children with developmental issues.
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9. Does my child have to have blood drawn? Do I have to do all the study activities?
You can refuse any study activity and still participate in other study activities. However, it is important for the research that we get a complete picture of every family so we encourage families to complete all study activities.
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10. Where is the developmental assessment done?
The assessments are conducted at JFK Partners which is located on the Anschutz Medical Campus in the Education 2 South Building, 5th Floor in Aurora, Colorado.
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11. Will families get any results from the study tests?
We will send each family who participates in the study a letter explaining the results of the developmental exams performed during their study visits.
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12. One of my child’s biological parents is unavailable. Can my child still participate?
We encourage both biological parents to participate in the study to get the most accurate understanding of the family. The biological mother must be living with the child, however if the child’s biological father is unavailable, the family may still participate.
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13. Can I get the study results?
Study results will be released to the public as soon as they become available. Because the study involves so many families we will be collecting data from 2012 through 2016. After that the data will need to be analyzed. Once data analysis has been completed the results will be reported. Some analyses may be conducted before the study data collection is over and those results can be released earlier. Families who participate in SEED will receive a study newsletter twice a year that may include some of these early results.
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14. How do I know my family’s information is protected?
The CDC has received a Certificate of Confidentiality which guarantees that any information collected that could identify you or your family will be used only for this study. Your information cannot be given to anyone else unless you give your written consent or unless otherwise required by law. In addition each site must follow security and confidentiality regulations set up by the federal government and the local Human Subjects Protections Committees.
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15. Will the study include vaccines as a potential cause of autism?
Yes, the study will collect data on vaccines. The exposures being studied include – vaccines the mother received during pregnancy, the child’s vaccine exposures after birth and other factors.
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16. I have questions about my child’s development. Who can I call?
Your child’s doctor is the best person to discuss your child’s development with you.
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