[Federal Register Volume 73, Number 168 (Thursday, August 28, 2008)]
[Notices]
[Pages 50820-50821]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: E8-19968]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

[30Day-08-08AL]


Proposed Data Collections Submitted for Public Comment and 
Recommendations

    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 (404) 639-5960 or send an e-mail 
to <a href="/cdn-cgi/l/email-protection#dab5b7b89ab9beb9f4bdb5ac"><span class="__cf_email__" data-cfemail="3b5456597b585f58155c544d">[email protected]</span></a>. Send written comments to CDC Desk Officer, Office of 
Management and Budget, Washington, DC or by fax to (202) 395-6974. 
Written comments should be received within 30 days of this notice.

Proposed Project

    The Natural History of Spina Bifida in Children Pilot Project-New-
National Center on Birth Defects and Developmental Disabilities 
(NCBDDD), Centers for Disease Control and Prevention (CDC).

Background and Brief Description

    Spina Bifida (SB) is one of the most common birth defects, 
affecting approximately 2 per 10,000 live births in the United States 
annually. To date, there are no U.S. population-based cohort studies or 
programs on the natural history of SB. This is of importance because 
persons with SB often experience condition-specific difficulties and 
secondary conditions that detrimentally affect several aspects of their 
lives. The long-term purpose of this project is to increase the 
knowledge about the natural history of Spina Bifida by prospectively 
studying children who were born with this potentially disabling 
condition. We estimate to enroll approximately 40 parents with a child 
with Spina Bifida ages 3-, 4-, or 5-years of age, and 20 of the 
children of these forty parents. The data to be collected will relate 
to medical concerns prevalent among individuals with Spina Bifida in 
the areas of neurology/neurosurgery, urology, and orthopedics; 
development and learning; nutrition and physical growth; mobility and 
functioning; general health; and family demographics. Families 
interested in participating can choose between participating in a phone 
survey (no more than 45 minutes) or an in-person assessment (no more 
than 3 hrs). For families who participate in the in-person assessment 
(estimated to be twenty of the forty families), the child will also be 
invited to participate in a child-appropriate assessment.
    Data will also be collected on the actual recruitment process. 
Results from the project will be evaluated and disseminated to provide 
guidance for states that are interested in following children with 
Spina Bifida prospectively. The proposed project is the initial step to 
document the development, the health status, and the onset of 
complications among children with SB in order that effective 
interventions may be identified that will ameliorate the course of this 
complex, multi-system condition. Long-term results will help determine 
if it would be beneficial to systematically screen children with Spina 
Bifida for certain health-related educational and developmental 
problems that these children are at an increased risk of experiencing 
and at what age such a screening should be performed.
    There will be no cost to the respondents other than their time. The 
total estimated annualized burden hours are 97.

                                        Estimated Annualized Burden Hours
----------------------------------------------------------------------------------------------------------------
                                                                                     Number of    Average burden
                           Respondents                               Number of     responses per   per  response
                                                                    respondents     respondent      (in hours)
----------------------------------------------------------------------------------------------------------------
Parents (phone survey)..........................................              20               1           45/60
Parents (in-person assessment)..................................              20               1             2.5
Child (in-person assessment)....................................              20               1             1.5
SB Clinic Coordinator (recruitment effort)......................               1               1               2
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[[Page 50821]]

    Dated: August 22, 2008.
Maryam I. Daneshvar,
Acting Reports Clearance Officer, Centers for Disease Control and 
Prevention.
[FR Doc. E8-19968 Filed 8-27-08; 8:45 am]
BILLING CODE 4163-18-P


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