[Federal Register Volume 87, Number 140 (Friday, July 22, 2022)]
[Notices]
[Pages 43858-43859]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2022-15730]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

[30Day-22-22CL]


Agency Forms Undergoing Paperwork Reduction Act Review

    In accordance with the Paperwork Reduction Act of 1995, the Centers 
for Disease Control and Prevention (CDC) has submitted the information 
collection request titled Population-based Surveillance of Outcomes, 
Needs, and Well-being of Children and Adolescents with Congenital Heart 
Defects to the Office of Management and Budget (OMB) for review and 
approval. CDC previously published a ``Proposed Data Collection 
Submitted for Public Comment and Recommendations'' notice on February 
14, 2022 to obtain comments from the public and affected agencies. CDC 
received five comments related to the previous notice. This notice 
serves to allow an additional 30 days for public and affected agency 
comments.
    CDC will accept all comments for this proposed information 
collection project. The Office of Management and Budget is particularly 
interested in comments that:
    (a) Evaluate whether the proposed collection of information is 
necessary for the proper performance of the functions of the agency, 
including whether the information will have practical utility;
    (b) Evaluate the accuracy of the agencies estimate of the burden of 
the proposed collection of information, including the validity of the 
methodology and assumptions used;
    (c) Enhance the quality, utility, and clarity of the information to 
be collected;
    (d) Minimize the burden of the collection of information on those 
who are to respond, including, through the use of appropriate 
automated, electronic, mechanical, or other technological collection 
techniques or other forms of information technology, e.g., permitting 
electronic submission of responses; and
    (e) Assess information collection costs.
    To request additional information on the proposed project or to 
obtain a copy of the information collection plan and instruments, call 
(404) 639-7570. Comments and recommendations for the proposed 
information collection should be sent within 30 days of publication of 
this notice to www.reginfo.gov/public/do/PRAMain. Find this particular 
information collection by selecting ``Currently under 30-day Review--
Open for Public Comments'' or by using the search function. Direct 
written comments and/or suggestions regarding the items contained in 
this notice to the Attention: CDC Desk Officer, Office of Management 
and Budget, 725 17th Street NW, Washington, DC 20503 or by fax to (202) 
395-5806. Provide written comments within 30 days of notice 
publication.

Proposed Project

    Population-based Surveillance of Outcomes, Needs, and Well-being of 
Children and Adolescents with Congenital Heart Defects--New--National 
Center on Birth Defects and Developmental Disabilities (NCBDDD), 
Centers for Disease Control and Prevention (CDC).

Background and Brief Description

    Congenital heart defects (CHD) are the most common type of 
structural birth defects, affecting approximately one in 110 live-born 
children. Due to advances in survival, there are approximately one 
million children with CHD in the United States. With vast declines in 
mortality from pediatric heart disease over the past 30 years, it is 
vital to evaluate health, social, educational, and quality of life 
outcomes beyond infancy and early childhood. However, existing U.S. 
population-based data are lacking on these outcomes among those born 
with CHD and the changes that may occur with time and age. U.S. data is 
needed to provide insight into the public health questions that remain 
for this population and to develop services and allocate resources to 
improve long-term health and well-being.
    For this project, we will use data from U.S. birth defect 
surveillance systems, or population-based studies derived from them, to 
identify a population-based sample of children and adolescents two to 
17 years of age born with CHD. Parents and caregivers of these 
individuals will serve as respondents for the CHSTRONG-KIDS survey. The 
CHSTRONG-KIDS survey will be administered at three sites. One site will 
be Atlanta, Georgia, where CDC

[[Page 43859]]

has managed and led the Metropolitan Atlanta Congenital Defects Program 
(MADCP) since 1967 and has a history of collaboration with local 
hospitals and the Georgia Department of Health. A competitive review 
process is underway to select the two additional sites. All three sites 
will then use state databases and online search engines to find current 
addresses for parents and caregivers of children with CHD and mail 
paper surveys to them.
    Survey questions inquire about the child's cardiac and other 
healthcare utilization,barriers to health care, quality of life, social 
and educational outcomes, and transition of care from childhood to 
adulthoodas well asneeds andexperiencesof thecaregivers. The 
information collected from this population-based survey will be used to 
inform current knowledge, allocate resources, develop services, and, 
ultimately, improve long-term health of children and adolescents born 
with CHD and their caregivers.
     OMB approval is requested for three years. During this period, we 
estimate receiving completed surveys from a total of 7,667 caregivers 
of children and adolescents with CHD, which equates to 2,556 
respondents per year. To generate sufficient sample size, accounting 
for non-response, we intend to sample 100% of eligible CHD cases 
identified through select birth defect surveillance systems. The survey 
takes approximately 20 minutes to complete, and includes skip patterns 
so that parents or caregivers are only asked age-relevant questions 
about their child to minimize burden per response. CDC estimates an 
annual total burden of 852 hours. Survey participation is voluntary and 
there are no costs to participants other than their time.

                                        Estimated Annualized Burden Hours
----------------------------------------------------------------------------------------------------------------
                                                                                   Number of     Average  burden
        Type of respondents                 Form name             Number of      responses per    per  response
                                                                 respondents       respondent       (in hours)
----------------------------------------------------------------------------------------------------------------
Caregivers of individuals aged 2-   Congenital Heart Survey             2,556                1            20/60
 17 years with a congenital heart    To Recognize Outcomes,
 defect.                             Needs, and wellbeinG of
                                     KIDS (CHSTRONG-KIDS).
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Jeffrey M. Zirger,
Lead, Information Collection Review Office, Office of Scientific 
Integrity, Office of Science, Centers for Disease Control and 
Prevention.
[FR Doc. 2022-15730 Filed 7-21-22; 8:45 am]
BILLING CODE 4163-18-P