[Federal Register Volume 73, Number 3 (Friday, January 4, 2008)]
[Notices]
[Pages 870-871]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: E7-25603]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


Agency Information Collection Activities: Proposed Collection: 
Comment Request

    In compliance with the requirement for opportunity for public 
comment on proposed data collection projects (section 3506(c)(2)(A) of 
Title 44, United States Code, as amended by the Paperwork Reduction Act 
of 1995, Public Law 104-13), the Health Resources and Services 
Administration (HRSA) publishes periodic summaries of proposed projects 
being developed for submission to the Office of Management and Budget 
(OMB) under the Paperwork Reduction Act of 1995. To request more 
information on the proposed project or to obtain a copy of the data 
collection plans and draft instruments, call the HRSA Reports Clearance 
Officer on (301) 443-1129.
    Comments are invited on: (a) The proposed collection of information 
for the proper performance of the functions of the agency; (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.

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 Pub. L. 
108-

[[Page 871]]

357, the American Jobs Creation Act of 2004. Section 712 of Pub. L. 
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
          Type of respondent                     Form name              respondents     respondent       Hours per response        Total burden hours
--------------------------------------------------------------------------------------------------------------------------------------------------------
Sickle Cell Disease clients or         Utilization Questionnaire                 400               1  .75.....................  300 hours.
 caregivers.                            (pre-demonstration).
Sickle Cell Disease clients or         Utilization Questionnaire                 400               1  .50 hours...............  200 hours.
 caregivers.                            (post-demonstration).
Sickle Cell Disease clients or         SF-36 Health Survey for                   400               2  .25 hours...............  200 hours.
 caregivers.                            adults over 18 years of age;
                                        PedsQL for children/
                                        adolescents 18 years or
                                        younger (Quality of Life).
Sickle Cell Disease clients or         The Medical Home Family Index             400               2  .25 hours...............  200 hours.
 caregivers.                            (Health Care Satisfaction).
--------------------------------------------------------------------------------------------------------------------------------------------------------

    The total burden is 900 hours or 2.25 hours per participant. This 
would be the maximum level of burden since some of the demonstration 
networks will be able to abstract medical records for some of the data 
collected on the Utilization Questionnaire.
    Send comments to Susan G. Queen, Ph.D., HRSA Reports Clearance 
Officer, Room 10-33, Parklawn Building, 5600 Fishers Lane, Rockville, 
MD 20857. Written comments should be received within 60 days of this 
notice.

    Dated: December 27, 2007.
Alexandra Huttinger,
Acting Director, Division of Policy Review and Coordination.
[FR Doc. E7-25603 Filed 1-3-08; 8:45 am]
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