[Federal Register Volume 73, Number 146 (Tuesday, July 29, 2008)]
[Notices]
[Pages 43943-43944]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: E8-17354]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


Agency Information Collection Activities: Submission for OMB 
Review; Comment Request

    Periodically, the Health Resources and Services Administration 
(HRSA) publishes abstracts of information collection requests under 
review by the Office of Management and Budget (OMB), in compliance with 
the Paperwork Reduction Act of 1995 (44 U.S.C. Chapter 35). To request 
a copy of the clearance requests submitted to OMB for review, e-mail 
[email protected] or call the HRSA Reports Clearance Office on (301) 
443-1129.
    The following request has been submitted to the Office of 
Management and Budget for review under the Paperwork Reduction Act of 
1995:

Proposed Project: Sickle Cell Disease Treatment Demonstration Program 
(SCDTDP), Health Resources and Services Administration (HRSA): NEW

    In 2004 Congress enacted and the President signed into law Public 
Law 108-357, the American Jobs Creation Act of 2004. Section 712 of 
Public Law 108-357 authorized a demonstration program for the 
prevention and treatment of Sickle Cell Disease. The legislation was 
enacted to (1) create an optional medical assistance program for 
individuals with Sickle Cell Diseases for treatment and education, 
genetic counseling and other services to prevent mortality and decrease 
morbidity from Sickle Cell Disease, and (2) create a demonstration 
program, the SCDTDP, under HRSA. The SCDTDP provides grants to 
federally-qualified and nonprofit health care providers to establish 
geographically distributed regional networks that will work with 
comprehensive Sickle Cell Disease centers and community-based support 
organizations to provide coordinated, comprehensive, culturally 
competent, and family-centered care to families with Sickle Cell 
Disease. In fiscal year 2006, HRSA awarded four, 4-year grants to the 
Illinois Sickle Cell Association Network, Alabama Network for Sickle 
Cell Care, Access, Prevention, and Education, Carolina Partnership for 
Sickle Cell Treatment Continuum of Care, and the Cincinnati Sickle Cell 
Network.
    Under the authorizing legislation, a National Coordinating Center 
(NCC) was established to (1) collect, coordinate, monitor, and 
distribute data, best practices and findings regarding the activities 
of the demonstration program, (2) identify a model protocol for 
eligible entities with respect to the prevention and treatment of 
Sickle Cell Disease, (3) identify educational materials regarding the 
prevention and treatment of Sickle Cell Disease, and (4) prepare a 
final report on the efficacy of the demonstration program based on 
evaluation findings.
    As part of the evaluation, pre and post utilization and 
satisfaction data and quality of life assessments will be collected 
from the demonstration clients during various phases of their 
participation. These data will be collected through medical record 
abstractions and self-report using hard copy questionnaires and 
submitted to the NCC for processing and analysis.
    The total burden estimate per participant is shown below:

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                                                                             Number of     Responses per       Total         Hours per     Total burden
            Type of respondent                        Form name             respondents     respondent       responses       response          hours
--------------------------------------------------------------------------------------------------------------------------------------------------------
Sickle Cell Disease clients or caregivers.  Utilization Questionnaire                400               1             400             .75             300
                                             (pre-demonstration).
Sickle Cell Disease clients or caregivers.  Utilization Questionnaire                400               1             400             .50             200
                                             (post demonstration).
Sickle Cell Disease clients or caregivers.  SF-36 Health Survey for                  280               2             560             .25             140
                                             adults over 18 years of age.
Parents of Sickle Cell Disease clients....  PedsQL for parents..........             120               2             240             .25              60
Sickle Cell Disease clients age 18 and      PedsQL for children and                  100               2             200             .25              50
 younger.                                    adolescents.
Sickle Cell Disease clients or caregivers.  The Medical Home Family                  400               2             800             .25             200
                                             Index (Health Care
                                             Satisfaction).
                                                                         -------------------------------------------------------------------------------
    Total.................................  ............................             500  ..............           2,600  ..............             950
--------------------------------------------------------------------------------------------------------------------------------------------------------

    Written comments and recommendations concerning the proposed 
information collection should be sent within 30 days of this notice to 
the desk officer for HRSA, either by e-mail to [email protected] or by fax to 202-395-6974. Please direct all 
correspondence to the ``attention of the desk officer for HRSA.''


[[Page 43944]]


    Dated: July 23, 2008.
 Alexandra Huttinger,
Director, Division of Policy Review and Coordination.
 [FR Doc. E8-17354 Filed 7-28-08; 8:45 am]
BILLING CODE 4165-15-P