Sickle Cell Disease Treatment Demonstration Regional Collaborative Program: Quality Improvement and Performance Measure Data Collection

Forms and Documents

Document Name	Status
Form 2 2. The Sickle Cell Disease Treatment Demonstration Regional Collaborative Program Performance Measures Data Collection Form Form and Instruction	New
Form 1 The Sickle Cell Disease Treatment Demonstration Regional Collaborative Program Quality Improvement Data Collection Form Form and Instruction	New
APPENDIX D SCDTDRCP OMB 60DayFRN Published.1.23.20.pdf Supplementary Document	2020-06-24
SCDTDRCP Supporting Statement.docx Supporting Statement A	2020-06-24

IC Document Collections

IC ID	Document Title	Status
242428	2. The Sickle Cell Disease Treatment Demonstration Regional Collaborative Program Performance Measures Data Collection Form Form and Instruction	New
242427	The Sickle Cell Disease Treatment Demonstration Regional Collaborative Program Quality Improvement Data Collection Form Form and Instruction	New

ICR Details

OMB Control No: 0906-0055	ICR Reference No: 202006-0906-001
Status: 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

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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.

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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

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

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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

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Number of Information Collection (IC) in this ICR: 2

IC Title	Form No.	Form Name
The Sickle Cell Disease Treatment Demonstration Regional Collaborative Program Quality Improvement Data Collection Form	1	Quality Improvement Measures Data Collection Form
2. The Sickle Cell Disease Treatment Demonstration Regional Collaborative Program Performance Measures Data Collection Form	2	Performance Measures Data Collection Documents.pdf

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ICR Summary of Burden

	Total Approved	Previously Approved	Change Due to New Statute	Change Due to Agency Discretion	Change Due to Adjustment in Estimate	Change Due to Potential Violation of the PRA
Annual Number of Responses	525	0	0	525	0	0
Annual Time Burden (Hours)	3,165	0	0	3,165	0	0
Annual Cost Burden (Dollars)	0	0	0	0	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).

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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

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Common Form ICR:  No

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On behalf of this Federal agency, I certify that the collection of information encompassed by this request complies with 5 CFR 1320.9 and the related provisions of 5 CFR 1320.8(b)(3).

The following is a summary of the topics, regarding the proposed collection of information, that the certification covers:

(a) It is necessary for the proper performance of agency functions;

(b) It avoids unnecessary duplication;

(c) It reduces burden on small entities;

(d) It uses plain, coherent, and unambiguous language that is understandable to respondents;

(e) Its implementation will be consistent and compatible with current reporting and recordkeeping practices;

(f) It indicates the retention periods for recordkeeping requirements;

(g) It informs respondents of the information called for under 5 CFR 1320.8 (b)(3) about:

(i) Why the information is being collected;

(ii) Use of information;

(iii) Burden estimate;

(iv) Nature of response (voluntary, required for a benefit, or mandatory);

(v) Nature and extent of confidentiality; and

(vi) Need to display currently valid OMB control number;

(h) It was developed by an office that has planned and allocated resources for the efficient and effective management and use of the information to be collected.

(i) It uses effective and efficient statistical survey methodology (if applicable); and

(j) It makes appropriate use of information technology.

If you are unable to certify compliance with any of these provisions, identify the item by leaving the box unchecked and explain the reason in the Supporting Statement.

Certification Date: 07/07/2020

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