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Research

Microscope, stethescope, and notepad

The Centers for Disease Control and Prevention (CDC) works with partners to conduct research to better understand Tourette Syndrome (TS), including the prevalence of TS, the quality of life among people affected by TS, risk and protective factors associated with the impact of TS, and health risk behaviors associated with TS. Results from this research are used to better inform public health efforts to improve the lives and health outcomes of people affected by TS, to implement education programs to help improve the quality of life of those with TS and their families, and to inform future research.

CDC conducts research to:

  • Find out how many people have TS and the characteristics of people with TS.
  • Determine the impact of TS on individuals; families; and communities, including schools.

Bridging the Gap between Public Health and Tourette Syndrome

The National Center on Birth Defects and Developmental Disabilities is working to improve the systematic understanding of Tourette Syndrome, and the health and well-being of people affected by Tourette Syndrome. The approach is based a summary report on Tourette Syndrome that highlights gaps in knowledge and resources that can be addressed by public health. The report was informed by a literature review and expert panel, and describes public health activities that are needed.

Read Bridging the Gap between Public Health and Tourette Syndrome »

Prevalence and Characteristics of TS

It is important to know how many people have TS (prevalence). By studying the number of people diagnosed with TS and other tic disorders over time, we can determine whether the number is rising, dropping, or staying the same. We also can compare the number of people with TS across different areas of the country and among different groups of people. This information can help identify causes of TS and help communities plan for services.

Understanding the characteristics of people with TS helps researchers at CDC to better identify groups of people who might be at greater risk for TS, as well as groups who might be less likely to be diagnosed with TS. This information helps researchers at CDC focus future research and outreach activities.

Click here to view the prevalence for your region.

Programs conducted by the Tourette Syndrome Association-CDC Partnership
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Following are activities that CDC conducts or funds in order to learn more about the number of people with TS:

Child sitting on floor
National Survey of Children’s Health

CDC conducts a nationally representative survey that provides data on health conditions among children in the United States, called the National Survey of Children’s Health. Information on TS was collected for the first time in 2007-08, and again in 2011-12.

In that survey, parents were asked if their child had ever been diagnosed with TS, whether or not their child currently had TS, and about the severity of TS. This allowed us to calculate prevalence estimate of diagnosed TS based on a nationally representative sample, as well as information about the prevalence of co-occurring conditions and characteristics of children who had been diagnosed with TS. Additional analyses of this survey are ongoing.

The data showed that approximately 1 out of every 360 children 6 through 17 years of age in the United States had been diagnosed with TS; this represented about 138,000 children. [Read article on 2007-08 data] [Read summary of 2011-12 data]

Research on Children’s Mental Health

Project to Learn About Youth – Mental Health

Project to Learn about Youth PLAY logo

The Project to Learn About Youth – Mental Health (PLAY-MH) recently started in two communities. The focus is to study ADHD and other externalizing and internalizing disorders as well as tic disorders in school-aged children. The project will provide valuable information that can be used for public health prevention and intervention strategies to support children’s health and development.

Study questions include:

  • What percentage of children in the community has one or more mental, behavioral, or emotional disorders?
  • How frequently do these disorders appear together?
  • What type of treatment are community children receiving?

This new project uses the same methodology as the original Project to Learn about ADHD in Youth (PLAY) project. Read more about the original study approach here.

The Impact of TS

TS and co-occurring conditions can affect a person’s quality of life, including peer relationships, education, risk-taking behaviors, health care use, and socioeconomic factors. CDC wants to find ways to improve outcomes for people with TS, their families, and their communities.

National Survey Data

The CDC is using data from national surveys to understand the impact of TS on individuals and their families. Two studies using data from the National Survey of Children’s Health have been published, one study on TS and health care and one on TS and parenting aggravation.

  • Health care needs were compared for children with TS, children with another chronic condition (asthma), and children without TS. The findings showed that children with TS experience greater health care needs and face more challenges receiving coordinated care compared to children without TS or even another chronic condition, asthma. These challenges were greater for children who had other conditions in addition to TS, such as attention-deficit/hyperactivity disorder, a behavior or conduct problem, anxiety, depression, or an autism spectrum disorder.
    [Read more here]
  • Parenting aggravation was compared for parents of children with or without TS. Compared with parents of children without TS, parents of children with TS were more likely to report feeling bothered or angry with their child and to report that their child was more difficult to care for than other children of the same age. Parents of children who had TS and another condition were particularly likely to score high on a measure of parenting aggravation.
    [Read more here]

The findings of these studies point to the significant impact of TS on the lives of the individuals and their families. The highest impact is often felt when TS co-occurs with another mental, emotional, or behavioral condition.

Impact of TS and Other Tic Disorders Among Youth

Researchers at the University of Rochester and the University of South Florida are collaborating with CDC to better understand the public health impact of tic disorders including TS, on individuals, families, and communities. Objectives of these studies include:

  • Determining the impact of tic disorders, including TS, across multiple domains (for example, family, social relationships, school, and health behaviors).
  • Identifying factors associated with poorer functioning, that might inform interventions.
  • Describing the cost of TS.
  • Describing health care use and access to care by individuals with tic disorders.
University of Oklahoma Health Sciences Center

CDC is working with the University of Oklahoma Health Sciences Center to determine the number of school-aged children with tic disorders, including TS. This study is an extension of a previously funded study called the Project to Learn about ADHD in Youth (PLAY).

Specific objectives of the study are to determine the:

  • Prevalence of tic disorders in a diverse community.
  • Feasibility of having teachers screen for tic disorders.
  • Existence of co-occurring conditions among children with tic disorders.
  • Short- and long-term outcomes among children with tic disorders.
  • Types and rates of health risk behaviors among children with tic disorders.
  • Current and previous treatment patterns of children with tic disorders.

For More Information

For information on clinical trials and TS

Tourette Syndrome Association (TSA) supported research

Excerpts from 5th International Scientific Symposium on Tourette Syndrome

 

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