2011-19107. Agency Forms Undergoing Paperwork Reduction Act Review

The Centers for Disease Control and Prevention (CDC) publishes a list of information collection requests under review by the Office of Management and Budget (OMB) in compliance with the Paperwork Reduction Act (44 U.S.C. Chapter 35). To request a copy of these requests, call the CDC Reports Clearance Officer at [phone] or send an e-mail to [e-mail]. Send written comments to CDC Desk Officer, Office of Management and Budget, Washington, DC 20503 or by fax to [phone]. Written comments should be received within 30 days of this notice.

Proposed Project

Tourette Syndrome National Education and Outreach Program—New—National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC).

Background and Brief Description

This program will collect program evaluation data from participants of educational workshops and recipients of educational resources on Tourette Syndrome (TS) conducted by the Tourette Syndrome Association in a cooperative agreement with the CDC.

TS is an inherited, neurobiological movement disorder characterized by involuntary motor and vocal tics that typically manifest during childhood. The exact number of people with TS is unknown. Data from the National Survey of Children's Health 2007 resulted in an estimate that 3 out of every 1,000 U.S. children (about 148,000) 6 through 17 years of age had been diagnosed with TS. Higher prevalence estimates obtained from community studies likely mean that there are a significant number of individuals who have TS, but who have not been diagnosed. TS is three to four times more common among males than females.

It is estimated that tens of thousands or Americans with TS either go undiagnosed or the clinical care they do receive is inadequate. There is no known cure. The disorder may express itself with mild symptoms for some, and severe symptoms for others. Depending on the severity and duration, tic symptoms may also be diagnosed as chronic motor or vocal tic disorder, transient tic disorder, and tic disorder not otherwise specified. TS is associated with a high rate of co-morbid conditions.

There is a lack of accurate treatment information among the medical community as well as the general public, and a limited number of expert physicians—all resulting in significant under-diagnosis, misdiagnosis, and inadequate treatment with scant follow-up care. Children also meet with stigma and inadequate responses in educational settings, limiting their educational and social success.

To address these issues, the Tourette Syndrome Association has developed educational workshops and materials to improve the recognition and awareness of TS diagnosis, treatment, co-occurring conditions, and quality of life for those impacted by TS. Health education programs have been developed for 3 groups of audiences: Health professionals, education professionals, and people with TS and their families. The format includes general education programs for the 3 groups, as well as two more in-depth medical training programs for physicians on TS and on the Comprehensive Behavioral Intervention for Tics (CBIT) treatment. In addition, a range of professional health education materials in various formats have been developed as educational resources and will be disseminated.

CDC requests OMB approval to collect program evaluation information from workshop participants and recipients of educational materials over a three-year period. Participants of the workshops and recipients of educational resources will be completing program evaluation forms to provide information on whether the workshop or resource met the educational goals. The information will be used to improve future workshops.

There are no costs to respondents other than their time. The total estimated annual burden hours are 277.

Estimated Annualized Burden Hours

Type of respondent	Form name	Number of respondents	Number of responses/ respondent	Average burden/response (in hours)	Response burden (in hours)
Health professionals	Medical Program Evaluation	1,200	1	2/60	40
Health professionals	Physician Training Retreat Pre-test	50	1	3/60	3
	Physician Training Retreat Post-test	50	1	3/60	3
	Physician Training Retreat 3-Month Follow-up	30	1	2/60	1
Health professionals	CBIT Program Evaluation	500	1	2/60	17
	CBIT Pre-test	500	1	3/60	25
	CBIT Post-test	500	1	3/60	25
	CBIT Online Program Evaluation	50	1	1/60	1
	CBIT Program 3-Month Follow-up	300	1	1/60	5
Health professionals	Medical Resource Dissemination	210	1	2/60	7
Teachers/Educators	Education Program Evaluation	1,200	1	2/60	40
	Education Program Pre-test	800	1	3/60	40
	Education Program Post-test	800	1	3/60	40
	Education Resource Dissemination	210	1	2/60	7
Public	Family/Public Education Program Evaluation	250	1	2/60	8
	Family/Public Medical Program Evaluation	250	1	2/60	8
	Family Resource Dissemination	200	1	2/60	7

Dated: July 22, 2011.

Daniel L. Holcomb,

Reports Clearance Officer, Centers for Disease Control and Prevention.