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 Participant Questions and Answers

April 2012

Why is it important to participate in the National Children’s Study?
How many people will participate in the Study? 
How does someone know if they can be part of the Study?
What do researchers expect to learn from the Study?
What information will participants receive from the Study?
What if a potential participant doesn’t have any children or is not planning on getting pregnant or having children?
How will the Study collect information from participants?
What kind of a study is the National Children’s Study?
When did the Vanguard Study begin?
How will participant privacy be protected?
What is the cost of participating in the Study?
What if a participant’s or prospective participant’s pregnancy status changes?
What if a participant decides to end their participation in the Study?
What happens if a participant moves out of the Study area?
What about a participant’s other children?
Can an adopted child be in the Study?
Who is sponsoring the Study?
How can a prospective participant find out more about the Study?

 

Why is it important to participate in the National Children’s Study?

Participating in the National Children’s Study is a unique opportunity to be a part of a nationwide landmark health effort. It will be one of the most comprehensive research efforts, and the largest and most detailed study in history focused on children’s health and development in the United States. 

The National Children’s Study will examine important health issues to establish links between children’s environments and their health. By tracking children’s development from conception through infancy, childhood, and early adulthood, the Study hopes to determine what makes children healthy.

Women and their families can have a major impact on the health of future generations by joining the National Children’s Study, helping their communities and country to gain a better understanding of children’s health and development. For more information, see Importance of Participation.

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How many people will participate in the Study?

The National Children’s Study is the largest research Study of children’s health and development in the history of the United States. Current plans include enrollment of 100,000 women and their children into the Study.  

 

How does someone know if they can be part of the Study?

Only women and families who live within the pre-selected Study location areas will be eligible to take part in the Study. To find out about eligibility to participate in the Study, contact the appropriate local Study location. Even if a prospective participant is not planning to become pregnant right now, she may still want to learn about the Study in case her plans change in the future. For more information on eligibility, see Joining the Study.

 

What do researchers expect to learn from the Study?

The National Children’s Study will examine the effects of the environment, as broadly defined to include factors such as air, water, diet, sound, family dynamics, community and cultural influences, and genetics on the growth, development, and health of children across the United States, following them from before birth until age 21 years. The goal of the Study is to improve the health and well-being of children and contribute to understanding the role various factors have on health and disease. Findings from the Study will be made available as the research progresses, making potential benefits known to the public as soon as possible.

The National Children’s Study is:

  • data-driven
  • evidence-based
  • community and participant informed.

 

What information will participants receive from the Study?

Study staff will periodically provide participants general news and information about the Study through newsletters or through updates on the National Children’s Study Web site, including medical discoveries that have been made and research findings from the local Study teams. We will also give participants reports on some of the information we collect about them, like height, weight, and blood pressure. In addition, we will share Study data and information over the next two decades on both an individual and a community level.

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What if a potential participant doesn’t have any children or is not planning on getting pregnant or having children?

The Study is interested in talking to women of childbearing age in the Study areas, whether or not they are currently pregnant or planning a pregnancy.

 

How will the Study collect information from participants?

The Study will collect information on women before and during pregnancy and on their children from before birth into adulthood. By continuing to gather information from children and their families for 21 years, Study researchers will learn about health and development at different ages and stages of growth which will shed light on the factors that influence healthy development as children grow.

 

What kind of a study is the National Children’s Study?

The National Children’s Study is an observational study. This means that participants will be asked questions, not asked to change what they normally do. The Study will collect information in several ways. Participants will be asked to answer questions and to complete forms. If a participant is eligible to enroll in the Study, trained staff may also do simple physical measurements like height and weight, and collect biologic samples like blood, urine, and hair. Study staff may also collect environmental samples at a participant’s home, such as water and dust. Participants may also be asked to collect some of their own samples, and to keep track of certain things, like what they eat. Study representatives may also contact participants from time to time by phone, mail, or e-mail to ask a few questions.

Visits to women and their children will be spread out over the course of the 21 years of the Study. There may be a few visits while a participant is pregnant and a visit when she gives birth. There may be additional visits after birth and then throughout the years as the child grows.

 

When did the Vanguard Study begin?

Families began joining the Study, or enrolling, in some communities in 2009. Thirty additional locations participating in the Vanguard Study began enrollment in the Study in the latter part of 2010. Additional families began joining the Study in other communities thereafter. For full list of Study locations, see our Study Locations List
 

How will participant privacy be protected?

The National Children’s Study takes its commitment to protect the privacy and confidentiality of its participants very seriously. The National Children’s Study will meet or exceed all laws, regulations, and guidelines related to the strict protection of participant confidentiality and the confidentiality of the information participants share with the Study.

Participants’ personal information will be closely protected by Study staff members who are trained on issues related to privacy and confidentiality. Data collected for the Study will be used only for research purposes. The Study will use unique identification numbers and carefully designed computer-management systems that protect personal identifying information.

For more information, see Privacy and Informed Consent.

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What is the cost of participating in the Study?

There is no cost involved to become a National Children’s Study participant. If a participant provides consent and enrolls in the Study, the Study will pay for all tests and procedures. However, the Study will not provide or pay for participant’s general health care.

 

What if a participant’s or prospective participant’s pregnancy status changes?

Eligible participants may contact their local Study location if the status of their pregnancy changes. For example, if a participant is not pregnant when a Study representative first visits her, but she later becomes pregnant, she should call. Or if a woman was pregnant at the first visit, but is no longer pregnant, she should also contact her local Study Center. Additionally, if a participant is eligible for the Study but not pregnant at the time of the first visit, a Study representative may follow up to see if there has been a change in pregnancy status.

 

What if a participant decides to end their participation in the Study?

A participant can leave the Study at any time and can also leave and rejoin the Study.

 

What happens if a participant moves out of the Study area?

If a participant has already given birth and is planning to move, she should call her local Study Center to let them know she would still like to participate in the Study and give them her new address and telephone number. If a participant has not yet given birth when she moves, she may or may not be able to join the Study in her new home, but she should contact her local Study location for more information.

 

What about a participant’s other children?

The Study will only include children (including multiple births) who are born while their mother is enrolled in the Study. Participants should contact their local Study location for more details about eligibility.

 

Can an adopted child be in the Study?

If a child was born to a woman who lived in one of the selected Study areas during her pregnancy, it may be possible for that child to participate in the Study. Parents should contact the appropriate local Study location for more details about eligibility.

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Who is sponsoring the Study?

The Children’s Health Act of 2000 authorized the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and other federal agencies to conduct the National Children’s Study.

The National Children’s Study is led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (NIH) in collaboration with a consortium of federal government partners. Study partners include the National Institute of Environmental Health Sciences of the NIH, the Centers for Disease Control and Prevention, and the Environmental Protection Agency.

These departments and agencies are dedicated to working together to improve the health of our nation’s children through the successful completion of the National Children’s Study.

 

How can a prospective participant find out more about the Study?

To learn more about the National Children’s Study, see the following resources:

  2/10/2014
  2/10/2014