La Medida de Tics en Espanol: The Translation and Validation of Tourette Syndrome measures into Spanish

Grant Type
Grant Year
Institution Location
Institution Organization Name
University of Texas
Investigators Name
Peterson, Alan, PhD

All research involving human participants, must be approved by the principal investigator’s Institutional Review Board (IRB) prior to the start of the study. The primary role of an IRB is to ensure that the risk to a participating individual is minimized and that participants understand fully what the study involves (informed consent.) However, another role of an IRB is to ensure that the selection of participants is fair and equitable, and that no individual is denied the opportunity to take part in any study based on an arbitrary criterion such as gender, age, or because they do not speak English. The IRB thus ensures that investigators do not discriminate against the participation of minority groups, unless there is a scientifically valid reason to do so. People of Hispanic or Latino ethnicity are the nation’s largest minority group and yet are frequently underrepresented in health care studies because they do not speak or read English very well. Clinical studies on Tourette Syndrome (TS) sometimes exclude Spanish speaking participants because of the lack of validated Spanish language treatment outcome measures which means that investigators cannot be confident in the results that they may get. This project will translate and validate three of the most commonly used self-report instruments used in treatment-outcome studies of TS: the Tourette Syndrome Symptom List, the Hopkins Motor and Vocal Tic Scale, and the Tic Symptom Self Report. The methodology will follow established guidelines for translation. First, two independent translators will translate each instrument into Spanish. The measures will then be combined, or reconciled, into a single Spanish version and two “back translations” will be conducted by two additional translators who will translate the Spanish versions back into English. These versions will be compared to the original instruments. A committee approach will be used to resolve any discrepancies that occur during each of these translation processes. In the second part of the study, 100 individuals who can speak and read both English and Spanish will be asked to complete both a Spanish and English version of each of the three measures. Recruitment of the 100 participants will come from several sources including the San Antonio TSA regional chapter. The participants will include adults with TS as well as family members familiar with TS. Responses will be statistically analyzed to determine the validity of each of the translated measures. This work will enable Spanish-speaking minorities to be included fully in future clinical studies of TS. Alan L. Peterson, Ph.D. University of Texas Health Science Center, San Antonio, Texas Award: $50,315 Tourette Association of America Inc. – Research Grant Award 2006-2007