Tourette Southeast Centers Tic Disorders Data Bank

Purpose

We wish to store your medical information and routine completed questionnaires to potentially use it in future research. Many different kinds of research uses medical information from data bank sources.

Some researchers may develop new tests to find diseases or complete assessments that ease the process of diagnosing disorders. Others may develop new ways to treat or even cure diseases. In the future, some of the research done with your medical information and clinical questionnaires may help to develop new products, such as tests, treatments and drugs.

By allowing your medical information and clinical questionnaires to be stored as part of the Southeast Centers Tic Disorders Data Bank, to be utilized for future unknown research, your information will be gathered with data with the following six clinics (who are designated as a collaborative consortium Southeast Regional Centers of Excellence within the Tourette Association of America):

  • Emory University
  • University of Alabama-Birmingham
  • University of Florida
  • University of Miami
  • Palmetto Health-University of South Carolina
  • University of South Florida-Rothman Center

Procedures

Your medical information and clinical questionnaires will be kept in a secure location in an online data bank system called REDCap, hosted through the University of Florida, so that it may be used in future research to learn more about your medical condition and other medical problems.

Your medical information and clinical questionnaires/data will be collected during your routine visit and entered into the secure database at each designated clinic via the REDCap.

Eligibility

  • Patient at the UF Health Center for Excellence Tourette Clinic

For information about study procedures or becoming a patient at the UF Health Center for Excellence Tourette Clinic, please contact Heather Simpson: 

Age

18 and under
18 to 65
65 and over

Gender

Male
Female

Monetary compensation

No

Can be done from home

No

Keywords

Tourette Syndrome, Neurology

Principal Investigator

Irene Malaty, MD

Department

Neurology

Contact Information

simph@shands.ufl.edu

(352) 294-5385


Be an Informed Participant

Before deciding to participate in a research study, take time to learn about clinical research, how it's conducted and your rights as a research participant. Following are some helpful resources from independent sources. Always remember that a clinical research study is research, not treatment.

Know Who to Contact

  • Eligibility: For questions about a specific study and who is eligible to participate, call or email the contact person listed for that study.
  • Your Rights: For questions about your rights as a research participant, contact the UF Institutional Review Boards at 352-273-9600.
  • Feedback: For general questions or feedback about study listings, email the UF Clinical and Translational Science Institute at CTSI-Studies-L@lists.ufl.edu.

Other Resources

  • HealthStreet: Health-focused services, classes and events, and opportunities to participate in research.
  • ResearchMatch.org: Join a national registry of volunteers willing to be contacted about research studies.

For Research Teams