Note: This study is currently only recruiting patients in the hospital.

If you are interested in being notified if this study begins recruiting from the general population, please use the 'I Am Interested' button below.

Participants Needed with Tourette Syndrome and Related Tic Disorders for Survey Study

The goal of our study is to understand the association between social determinants of health and tic impairment measures in Tourette Syndrome and/or Persistent Motor or Vocal Tic Disorder (previously known as Chronic Tic Disorder).

Massachusetts General Hospital Movement Disorders Tourette Syndrome Health Disparities
45 minutes
Estimated Time Commitment
Any Sex/Gender, 6-years or older
May Be Eligible
Gift card up to $25
May Be Offered
Survey
May Be Required
 
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This project is not recruiting.

Overview

What we are studying

Social determinants of health are the "conditions in the places where people live, learn, work, and play that affect a wide range of health, functioning, quality of life outcomes and risks (Health People 2030)." Researchers want to better understand the association between social determinants of health and impact on the quality of life and impairment in individuals with Tourette Syndrome and Persistent Motor or Vocal Tic Disorder.


Why it is important

Understanding data on social determinants of health can help us focus efforts to improve quality of care and provide equitable health care for individuals with Tourette Syndrome and Persistent Motor or Vocal Tic Disorders.


What we hope to accomplish

If there are disparities identified, we will investigate why these disparities exist and propose interventions to provide equitable healthcare for all individuals with Tourette Syndrome and related tic disorders.

Principal Investigator

Marisela Dy-Hollins, M.D.

Massachusetts General Hospital

Public Profile

Who can participate

We are looking for people who are 6 years of age or older that have received a diagnosis of Tourette Syndrome (TS) or Persistent motor or vocal tic disorder (PMVT, previously known as chronic tic disorder) by a neurologist, psychiatrist, and/or licensed professional.

Who cannot participate

Individuals less than 6 years old and/or who have not received a diagnosis of Tourette Syndrome or Persistent Motor or Vocal Tic Disoder (previously known as chronic tic disorder).

What you may be asked to do

In this study, you would answer a series of questions through a REDCap online survey. We ask that you provide information regarding your medical information such as when your tics started, possibly co-occurring medical condistions such as attention-deficit hyperactivity disorder and/or obsessive-compulsive disorder, and impact on quality of life. We also ask that you tell us about your social demographics, such as your age, race, ethnicity, sex, gender, and socioeconomic status (e.g., level of education, and community of residence). Lastly, you will answer questions about your quality of life and potential impairments you face related to your tic symptoms. Altogether, the survey should take about 30-45 minutes to complete. Afterward, you will receive a $25 gift card for your time and participation in research.


Project activities may include:

  • Survey

Estimated Time Commitment

45 minutes

What You May Get

After completing the online survey, you will receive a $25 gift card for your time and participation in research.

Location


Travel

  • No travel required

Travel and Parking Details

Additional Information

Participating Institutions


Funding Source

  • NIH or Other Federal
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