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

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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 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:

Type of respondentForm nameNumber of respondentsResponses per respondentTotal responsesHours per responseTotal burden hours
Sickle Cell Disease clients or caregiversUtilization Questionnaire (pre-demonstration)4001400.75300
Sickle Cell Disease clients or caregiversUtilization Questionnaire (post demonstration)4001400.50200
Sickle Cell Disease clients or caregiversSF-36 Health Survey for adults over 18 years of age2802560.25140
Parents of Sickle Cell Disease clientsPedsQL for parents1202240.2560
Sickle Cell Disease clients age 18 and youngerPedsQL for children and adolescents1002200.2550
Sickle Cell Disease clients or caregiversThe Medical Home Family Index (Health Care Satisfaction)4002800.25200

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 or by fax to 202-395-6974. Please direct all correspondence to the “attention of the desk officer for HRSA.”

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Dated: July 23, 2008.

Alexandra Huttinger,

Director, Division of Policy Review and Coordination.

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[FR Doc. E8-17354 Filed 7-28-08; 8:45 am]