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OMB Control No: 0906-0055	ICR Reference No: 202006-0906-001
Status: Historical Active	Previous ICR Reference No:
Agency/Subagency: HHS/HRSA	Agency Tracking No:
Title: Sickle Cell Disease Treatment Demonstration Regional Collaborative Program: Quality Improvement and Performance Measure Data Collection
Type of Information Collection: New collection (Request for a new OMB Control Number)	Common Form ICR: No
Type of Review Request: Regular
OIRA Conclusion Action: Approved without change	Conclusion Date: 09/21/2020
	Date Received in OIRA: 07/07/2020
Terms of Clearance:

	Inventory as of this Action	Requested	Previously Approved
Expiration Date	09/30/2023	36 Months From Approved
Responses	525	0	0
Time Burden (Hours)	3,165	0	0
Cost Burden (Dollars)	0	0	0

Abstract: The Sickle Cell Disease Treatment Demonstration Regional Collaborative Program (SCDTDRCP) was reauthorized under the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018, 42 U.S.C. § 300b-5. The goals of the SCDTDRCP are to improve health outcomes in individuals with sickle cell disease (SCD); reduce morbidity and mortality caused by SCD; reduce the number of individuals with SCD receiving care only in emergency departments; and improve the quality of coordinated and comprehensive services to individuals with SCD and their families. The program funds five grantees to establish regional networks to provide leadership and support for regional and statewide activities in SCD. The grantees develop and establish systemic mechanisms to improve the treatment of SCD, by: 1) increasing the number of providers treating individuals with SCD using the National Heart, Lung and Blood Institute (NHLBI) Evidence-Based Management of SCD Expert Panel Report; 2) using tele-mentoring, telemedicine and other provider support strategies to increase the number of providers administering evidence-based sickle cell care; and 3) developing and implementing strategies to improve access to quality care with emphasis on individual and family engagement/partnership, adolescent transitions to adult life, and care in a medical home. Per the statutory requirement, the data collected will be used to evaluate the program and will be published in a report to Congress. The purpose of the data collection strategy is to evaluate the effectiveness of the SCDTDRCP and how the program can improve the coordination of service delivery for individuals with sickle cell disease (SCD), train health professionals to increase access to quality care, and collaborate with various stakeholders to optimize health outcomes for individuals with SCD. Data collected by the SCDTDRCP grantees will be summarized in a Report to Congress.

Authorizing Statute(s): PL: Pub.L. 115 - 327 0 Name of Law: Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Trea

Citations for New Statutory Requirements: None

Associated Rulemaking Information
RIN:	Stage of Rulemaking:	Federal Register Citation:	Date:
	Not associated with rulemaking

Federal Register Notices & Comments
60-day Notice:	Federal Register Citation:	Citation Date:
	85 FR 3935	01/23/2020
30-day Notice:	Federal Register Citation:	Citation Date:
	85 FR 40666	07/07/2020
Did the Agency receive public comments on this ICR? No

ICR Summary of Burden

	Total Approved	Change Due to Agency Discretion
Annual Number of Responses	525	525
Annual Time Burden (Hours)	3,165	3,165
Annual Cost Burden (Dollars)	0	0

Burden increases because of Program Change due to Agency Discretion: Yes

Burden Increase Due to: Miscellaneous Actions

Burden decreases because of Program Change due to Agency Discretion: No

Burden Reduction Due to:

Short Statement: This is a new ICR so burden increases from zero (0).

Annual Cost to Federal Government: $271,837

Does this IC contain surveys, censuses, or employ statistical methods? No

Does this ICR request any personally identifiable information (see OMB Circular No. A-130 for an explanation of this term)? Please consult with your agency's privacy program when making this determination. No

Does this ICR include a form that requires a Privacy Act Statement (see 5 U.S.C. §552a(e)(3))? Please consult with your agency's privacy program when making this determination. No

Is this ICR related to the Affordable Care Act [Pub. L. 111-148 & 111-152]? No

Is this ICR related to the Dodd-Frank Wall Street Reform and Consumer Protection Act, [Pub. L. 111-203]? No

Is this ICR related to the American Recovery and Reinvestment Act of 2009 (ARRA)? No

Is this ICR related to the Pandemic Response? No

Agency Contact: Elyana Bowman 301 443-3983 enadjem@hrsa.gov

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