Proposed Data Collections Submitted for Public Comment and Recommendations

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Federal RegisterJun 17, 2004
69 Fed. Reg. 33904 (Jun. 17, 2004)

In compliance with the requirement of section 3506(c)(2)(A) of the Paperwork Reduction Act of 1995 for opportunity for public comment on proposed data collection projects, the Centers for Disease Control and Prevention (CDC) will publish periodic summaries of proposed projects. To request more information on the proposed projects or to obtain a copy of the data collection plans and instruments, call the CDC Reports Clearance Officer on (404) 498-1210.

Comments are invited on: (a) Whether the proposed collection of information is necessary for the proper performance of the functions of the agency, including whether the information shall have practical utility; (b) the accuracy of the agency's estimate of the burden of the proposed collection of information; (c) ways to enhance the quality, utility, and clarity of the information to be collected; and (d) ways to minimize the burden of the collection of information on respondents, including through the use of automated collection techniques or other forms of information technology. Send comments to Seleda Perryman, CDC Assistant Reports Clearance Officer, 1600 Clifton Road, MS-E11, Atlanta, GA 30333 or send an e-mail to omb@cdc.gov. Written comments should be received within 60 days of this notice.

Proposed Project

Validating Autism Surveillance Methodology in Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)—New—National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC).

Background

MADDSP was established in 1991 as an ongoing active surveillance system for select developmental disabilities (mental retardation, cerebral palsy, vision impairment, and hearing loss) in 3 to 10 year old children. In 1996, autism spectrum disorders (ASD) was added to MADDSP due to growing concern about the prevalence of the condition. MADDSP defines ASD as a constellation of social, communicative, and behavioral impairments consistent with the DSM-IV-TR diagnostic criteria for Autistic Disorder, Asperger's Disorder, and Pervasive Developmental Disorders not otherwise specified.

MADDSP relies on an extensive review of records to identify children with an ASD. Potential case records are identified from multiple sources which are likely to maintain evaluation or treatment records for children with ASD. Pertinent ICD-9, DSM-IV codes and predetermined behavioral descriptions are used to trigger records for abstraction. Clinical experts then review the abstracted data and determine case status based on a behavioral coding scheme that is in accordance with the DSM-IV-TR definition for Pervasive Developmental Disorders.

This record review methodology for ASD surveillance has been executed and is being used; however, the method is not currently validated by a clinical sample which is considered the gold standard for identifying ASD. For this reason, it is important to validate surveillance methods in a clinical sample in order to determine whether current surveillance methodology accurately captures prevalence estimates for this developmental outcome. The sensitivity and specificity of MADDSP will be measured using judgments from the clinical exam as the gold standard. The results from this study will provide important implications for how ASD surveillance is maintained.

Primary caregivers of children already identified through surveillance methods will be contacted, informed of the study, and asked to participate through an invitation letter and/or telephone contact. Clinic visits will be scheduled for all children whose primary caregiver agrees to take part in the study and who signs a written informed consent; child assent will be obtained at the time of the clinic visit. Data collection methods will consist of: (1) Parental questionnaires, which will focus on questions about their child's behavior and developmental history; and, (2) a developmental evaluation for the child participant, which includes a play based assessment specific to ASD and a measure of cognitive development. There is no cost to respondents.

Annualized Burden Table:

Survey instruments No. of respondents No. of responses per respondent Avg. burden per response (in hours) Total burden hours
Parental questionnaires 250 1 3 750
Child developmental evaluation measures 250 1 2 500
Total 1250

Dated: June 10, 2004.

Alvin Hall,

Director, Management Analysis and Services Office Centers for Disease Control and Prevention.

[FR Doc. 04-13710 Filed 6-16-04; 8:45 am]

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