[NCCDPHP]Sudden Death in the Young Registry

Forms and Documents

Document	Type	Status	Availability
Form 0920-1092 N SUID AND SDY CASE REGISTRY	Form	Modified	Repair queued
Form 0920-1092 SDY Module N for State Health Personnel	Form	Modified	Repair queued
Form 0920-1092 Att 2b_Advanced Review Topics_3_17_2025	Form	Modified	Repair queued
Form 0920-1092 Att 2a_NFR-CRS-SDY Module I	Form	Modified	Repair queued
NCFRP Cases Reporting System SDY Module 1	Form	Modified	Available
SDY Module - State Health Personnel	Form	Modified	Repair queued
Att 6 SUIDSDY_ResearchDetermination_Yr1.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 6 SUIDSDY_ResearchDetermination_Yr1.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 5_NCFRP Child Death Review _Case Reporting System Security Information.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 5_NCFRP Child Death Review _Case Reporting System Security Information.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 4_ MPHI Security Policy, #06-02 _ SDY.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 4_ MPHI Security Policy, #06-02 _ SDY.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 3a 2025-published 60 day FRN.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 3a 2025-published 60 day FRN.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 1b_Authorizing Legislation SUDDEA Act.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 1b_Authorizing Legislation SUDDEA Act.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 1a_Authorizing Legislation Public Health Service Act.pdf	Supplementary Document	Uploaded 2025-09-09	Available
Att 1a_Authorizing Legislation Public Health Service Act.pdf	Supplementary Document	Uploaded 2025-09-09	Repair queued
30-Day-FRN-508 - Updated 8-22-25.docx	Supplementary Document	Uploaded 2025-09-09	Repair queued
30-Day-FRN-508 - Updated 8-22-25.docx	Supplementary Document	Uploaded 2025-09-09	Repair queued
30-day-FRN_Publication_Request_Worksheet (4) Ver. 2.docx	Supplementary Document	Uploaded 2025-09-09	Repair queued
30-day-FRN_Publication_Request_Worksheet (4) Ver. 2.docx	Supplementary Document	Uploaded 2025-09-09	Repair queued
Att 8 Privacy-narrative-_SDY.pdf	Supplementary Document	Uploaded 2022-02-28	Available
Att 8 Privacy-narrative-_SDY.pdf	Supplementary Document	Uploaded 2022-02-28	Missing upstream
Att 7 Institutional Determination of Research Status_SDY.pdf	Supplementary Document	Uploaded 2022-02-28	Available
Att 7 Institutional Determination of Research Status_SDY.pdf	Supplementary Document	Uploaded 2022-02-28	Repair queued
Att 6_NCFRP Child Death Review _Case Reporting System Security Information.pdf	Supplementary Document	Uploaded 2022-01-26	Available
Att 6_NCFRP Child Death Review _Case Reporting System Security Information.pdf	Supplementary Document	Uploaded 2022-01-26	Missing upstream
Att 5_ MPHI Security Policy, #06-02 _ SDY.pdf	Supplementary Document	Uploaded 2022-01-26	Available
Att 5_ MPHI Security Policy, #06-02 _ SDY.pdf	Supplementary Document	Uploaded 2022-01-26	Missing upstream
Att 4b DUA between CDC and Awardees Alaska Example.pdf	Supplementary Document	Uploaded 2022-01-26	Repair queued
Att 4b DUA between CDC and Awardees Alaska Example.pdf	Supplementary Document	Uploaded 2022-01-26	Repair queued
Att 4a DUA between CDC and MPHI.pdf	Supplementary Document	Uploaded 2022-01-26	Repair queued
Att 4a DUA between CDC and MPHI.pdf	Supplementary Document	Uploaded 2022-01-26	Repair queued
Att 3a_60 day Federal Reserve Notice.pdf	Supplementary Document	Uploaded 2022-01-26	Repair queued
Att 3a_60 day Federal Reserve Notice.pdf	Supplementary Document	Uploaded 2022-01-26	Repair queued
Att 1b_Authorizing Legislation SUDDEA Act.pdf	Supplementary Document	Uploaded 2019-02-11	Available
Att 1b_Authorizing Legislation SUDDEA Act.pdf	Supplementary Document	Uploaded 2019-02-11	Repair queued
Att 1a_Authorizing Legislation Public Health Service Act.docx	Supplementary Document	Uploaded 2019-02-11	Repair queued
Att 1a_Authorizing Legislation Public Health Service Act.docx	Supplementary Document	Uploaded 2019-02-11	Repair queued
Supporting-Statement-B_Sudden Death in the Young.docx	Supporting Statement B	Uploaded 2025-09-09	Available
Supporting-Statement-B_Sudden Death in the Young.docx	Supporting Statement B	Uploaded 2025-09-09	Repair queued
Supporting-Statement-A-508_Sudden Dealth in the Young - FINAL DRAFT 3 - Updated 8-22-25.docx	Supporting Statement A	Uploaded 2025-09-09	Available
Supporting-Statement-A-508_Sudden Dealth in the Young - FINAL DRAFT 3 - Updated 8-22-25.docx	Supporting Statement A	Uploaded 2025-09-09	Repair queued

IC Document Collections

IC ID	Collection	Type	Status	Form
234894	SDY Module N for State Health Personnel	Form	Modified	N SUID AND SDY CASE REGISTRY
234894	SDY Module N for State Health Personnel	Form	Modified
234893	Advanced Review	Form	Modified	Att 2b_Advanced Review Topics_3_17_2025
234893	Advanced Review	Other-Discussion Guide	Modified
217617	SDY Module - State Health Personnel	Form	Modified	Att 2a_NFR-CRS-SDY Module I
217617	SDY Module - State Health Personnel	Form	Modified	NCFRP Cases Reporting System SDY Module 1
217617	SDY Module - State Health Personnel	Form	Modified

ICR Details

OMB Control No: 0920-1092	ICR Reference No: 202508-0920-008
Status: Active	Previous ICR Reference No: 202201-0920-011
Agency/Subagency: HHS/CDC	Agency Tracking No: 0920-1092
Title: [NCCDPHP]Sudden Death in the Young Registry
Type of Information Collection: Revision of a currently approved collection	Common Form ICR:  No
Type of Review Request: Regular
OIRA Conclusion Action: Approved without change	Conclusion Date: 11/17/2025
Retrieve Notice of Action (NOA)	Date Received in OIRA: 09/09/2025
Terms of Clearance:

	Inventory as of this Action	Requested	Previously Approved
Expiration Date	11/30/2028	36 Months From Approved	11/30/2025
Responses	2,211	0	2,522
Time Burden (Hours)	438	0	511
Cost Burden (Dollars)	0	0	17,368

---

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. This is an extension of a collection set to expire 9/30/25

---

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

---

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:
	90 FR 25287	06/16/2025
30-day Notice:	Federal Register Citation:	Citation Date:
	90 FR 43447	09/09/2025
Did the Agency receive public comments on this ICR? No

---

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

IC Title	Form No.	Form Name
Advanced Review	0920-1092	Att 2b_Advanced Review Topics_3_17_2025
SDY Module - State Health Personnel	0920-1092, none	NCFRP Cases Reporting System SDY Module 1 ,   Att 2a_NFR-CRS-SDY Module I
SDY Module N for State Health Personnel	0920-1092	N SUID AND SDY CASE REGISTRY

---

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	2,211	2,522	0	-311	0	0
Annual Time Burden (Hours)	438	511	0	-73	0	0
Annual Cost Burden (Dollars)	0	17,368	0	-17,368	0	0

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

Burden Increase Due to:

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

Burden Reduction Due to: Miscellaneous Actions

Short Statement: This is an extension of a previously approved collection. With changes in the number of responses and respondents for a total of 438 burden hours and three years of approval.

---

Annual Cost to Federal Government: $179,796

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? No

---

Common Form ICR:  No

---

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: 09/09/2025

---