Sudden Death in the Young Registry

Forms and Documents

Forms and supporting documents for this ICR

Document	Type	Status	Availability
NCFRP Case Reporting SDY Module N	Form	New	Available
NCRPCD Case Reporting System - SDY Module	Form	Removed	Available
NCRPCD Case Reporting System - SDY Module	Form	Removed	Available
NCRPCD Case Reporting System - SDY Module	Form	Removed	Available
NCRPCD Case Reporting System - SDY Module	Form	Removed	Available
NCFRP Cases Reporting System SDY Module 1	Form	Modified	Available
Att 6 SDY Awardees and Expected Number of Yearly Cases.docx	Supplementary Document	Uploaded 2019-02-11	Available
Att 5 Research Determination.pdf	Supplementary Document	Uploaded 2019-02-11	Available
Att 4b_NCFRP Child Death Review Case Reporting System Security.pdf	Supplementary Document	Uploaded 2019-02-11	Available
Att 4a_MPHI Security Policy.pdf	Supplementary Document	Uploaded 2019-02-11	Available
Att 3b DUA between CDC and State_Jurisdiction Awardees.docx	Supplementary Document	Uploaded 2019-02-11	Available
Att 3a DUA between CDC and MPHI.docx	Supplementary Document	Uploaded 2019-02-11	Available
Att 2 60 Day FRN.pdf	Supplementary Document	Uploaded 2019-02-11	Available
Att 1b_Authorizing Legislation SUDDEA Act.pdf	Supplementary Document	Uploaded 2019-02-11	Available
Att 1a_Authorizing Legislation Public Health Service Act.docx	Supplementary Document	Uploaded 2019-02-11	Available
SS B SDY 0920-1092_1_25_19.docx	Supporting Statement B	Uploaded 2019-02-11	Available
SS A SDY 0920-1092_1_25_19.docx	Supporting Statement A	Uploaded 2019-02-11	Available

IC Document Collections

Information collection document groups

IC ID	Collection	Type	Status	Form
234894	SDY Module N for State Health Personnel	Form	New	NCFRP Case Reporting SDY Module N
234893	Advanced Review	Other-Discussion Guide	New
217626	SDY Module - Forensic Pathologists	Form	Removed	NCRPCD Case Reporting System - SDY Module
217625	SDY Module - Neurologists	Form	Removed	NCRPCD Case Reporting System - SDY Module
217624	SDY Module - Epileptologists	Form	Removed	NCRPCD Case Reporting System - SDY Module
217618	SDY Module - Pediatric Cardiologists	Form	Removed	NCRPCD Case Reporting System - SDY Module
217617	SDY Module - State Health Personnel	Form	Modified	NCFRP Cases Reporting System SDY Module 1

ICR Details

OMB Control No: 0920-1092	ICR Reference No: 201902-0920-005
Status: Historical Active	Previous ICR Reference No: 201507-0920-009
Agency/Subagency: HHS/CDC	Agency Tracking No: 0920-1092
Title: Sudden Death in the Young Registry
Type of Information Collection: Reinstatement with change of a previously approved collection	Common Form ICR:  No
Type of Review Request: Regular
OIRA Conclusion Action: Approved without change	Conclusion Date: 04/09/2019
Retrieve Notice of Action (NOA)	Date Received in OIRA: 02/26/2019
Terms of Clearance: Approved consistent with the understanding that CDC will not be conducting any general research on the information collected from SDY cases. When communicating findings from this collection, all publications will clearly describe the scope and limitations of the study findings. In addition, CDC should improve their monitoring of expiring information collections to avoid unnecessary reinstatement requests.

table that charts list comparision

	Inventory as of this Action	Requested	Previously Approved
Expiration Date	04/30/2022	36 Months From Approved	12/31/2018
Responses	2,576	0	10,800
Time Burden (Hours)	521	0	900
Cost Burden (Dollars)	17,538	0	0

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Abstract: The goal of the Sudden Death in the Young (SDY) Case Registry is to improve and standardize case ascertainment so funded jurisdictions can better their understanding of the incidence and risk factors for sudden death in youth. Data will be used to inform the descriptive epidemiology of SDY, including the incidence, and risk factors. These data will be used to inform prevention strategies as well as best practices for national surveillance of SDY. The changes proposed with this reinstatement include a decrease in burden due to more accurate estimates of time needed to complete modules and better estimates of the number of respondents and the number requiring advanced review.

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Authorizing Statute(s): PL: Pub.L. 113 - 236 2 Name of Law: Sudden Unexpected Death Data Enhancement and Awareness Act
   US Code: 42 USC 241 Name of Law: Public Health Service Act
  

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:
	83 FR 55547	11/06/2018
30-day Notice:	Federal Register Citation:	Citation Date:
	84 FR 5687	02/22/2019
Did the Agency receive public comments on this ICR? No

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Number of Information Collection (IC) in this ICR: 3

table that charts list of burden

IC Title	Form No.	Form Name
Advanced Review
SDY Module - Epileptologists	NA	NCRPCD Case Reporting System - SDY Module
SDY Module - Forensic Pathologists	NA	NCRPCD Case Reporting System - SDY Module
SDY Module - Neurologists	NA	NCRPCD Case Reporting System - SDY Module
SDY Module - Pediatric Cardiologists	NA	NCRPCD Case Reporting System - SDY Module
SDY Module - State Health Personnel	none	NCFRP Cases Reporting System SDY Module 1
SDY Module N for State Health Personnel	none	NCFRP Case Reporting SDY Module N

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ICR Summary of Burden

table that charts list 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	2,576	10,800	0	-8,224	0	0
Annual Time Burden (Hours)	521	900	0	-379	0	0
Annual Cost Burden (Dollars)	17,538	0	0	17,538	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: Yes

Burden Reduction Due to: Miscellaneous Actions

Short Statement: This reinstatement with changes includes using better estimates of the number of expected respondents, better estimates of the time required to respond, and better estimates of the number of cases that require advanced review. Changes in the advance review process resulted in the removal of medical expert specific ICs. The burden has decreased from 900 annual hours to 521 and the number of respondents has been reduced from 10,800 to 2,576.

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Annual Cost to Federal Government: $106,441

Does this IC contain surveys, censuses, or employ statistical methods? Yes Part B of Supporting Statement

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? Uncollected

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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: 02/26/2019

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