[NCBDDD] Population-based Surveillance of Outcomes, Needs, and Well-being of Children and Adolescents with Congenital Heart Defects

Forms and Documents

Forms and supporting documents for this ICR

Document	Type	Status	Availability
Follow Up Question for Online Participants (Spanish)	Form and Instruction	Modified	Available
Follow Up Question for Online Participants (English)	Form and Instruction	Modified	Available
Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (English, phone, MA)	Form and Instruction	Modified	Available
Form 0920-1382 CH STRONG KIDS (Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG of KIDS)Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (Spanish, online)	Form and Instruction	Modified	Available
Form 0920-1382 CH STRONG KIDS (Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG of KIDS)Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (English, online)	Form and Instruction	Modified	Available
Form 0920-1382 CH STRONG KIDS (Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG of KIDS)Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (Somali, paper)	Form and Instruction	Modified	Available
Form 0920-1382 Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (Spanish, paper)	Form and Instruction	Modified	Available
Form 0920-1382 CH STRONG KIDS (English, paper)	Form and Instruction	Modified	Available
Form 0920-1382 CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	Form and Instruction	Modified	Repair queued
Change Request Memo - EO14168 Template_updated.docx	Justification for No Material/Nonsubstantive Change	Uploaded 2025-03-14	Available
Change Request Memo - EO14168 Template_updated.docx	Justification for No Material/Nonsubstantive Change	Uploaded 2025-03-14	Repair queued
ICR Change request memo_OMB 0920-1382_10.18.2023.docx	Justification for No Material/Nonsubstantive Change	Uploaded 2023-10-18	Available
ICR Change request memo_OMB 0920-1382_10.18.2023.docx	Justification for No Material/Nonsubstantive Change	Uploaded 2023-10-18	Repair queued
Att 35_MA Participant Info Sheet_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 35_MA Participant Info Sheet_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 34_MA Intro_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 34_MA Intro_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 33_MA Initial Letter_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 33_MA Initial Letter_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 31_Opt-out postcard_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 31_Opt-out postcard_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 30_Somali Intro_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 30_Somali Intro_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 29_Somali Participant Info Sheet_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 29_Somali Participant Info Sheet_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 26_ThankYouLetter Somali_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 26_ThankYouLetter Somali_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
ICR Change request memo.docx	Justification for No Material/Nonsubstantive Change	Uploaded 2023-05-25	Available
ICR Change request memo.docx	Justification for No Material/Nonsubstantive Change	Uploaded 2023-05-25	Repair queued
Att 22_References_updated_clean.docx	Supplementary Document	Uploaded 2022-11-23	Available
Att 22_References_updated_clean.docx	Supplementary Document	Uploaded 2022-11-23	Repair queued
Att 21_Postcards_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 21_Postcards_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 20_Initial Letter_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 20_Initial Letter_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 19_ Survey Question Crosswalk_TC.xlsx	Supplementary Document	Uploaded 2025-03-14	Available
Att 19_ Survey Question Crosswalk_TC.xlsx	Supplementary Document	Uploaded 2025-03-14	Missing upstream
Att 18_Spanish Intro_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 18_Spanish Intro_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 17_English Intro_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 17_English Intro_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 16_Spanish Participant Info Sheet.docx	Supplementary Document	Uploaded 2022-07-21	Available
Att 16_Spanish Participant Info Sheet.docx	Supplementary Document	Uploaded 2022-07-21	Available
Att 15_English Participant Info Sheet_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 15_English Participant Info Sheet_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 14_PIA_May23.pdf	Supplementary Document	Uploaded 2023-05-25	Available
Att 14_PIA_May23.pdf	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 13_Research Determination.pdf	Supplementary Document	Uploaded 2022-07-21	Available
Att 13_Research Determination.pdf	Supplementary Document	Uploaded 2022-07-21	Missing upstream
Att 12_ThankYouLetter Spanish.docx	Supplementary Document	Uploaded 2022-07-21	Available
Att 12_ThankYouLetter Spanish.docx	Supplementary Document	Uploaded 2022-07-21	Missing upstream
Att 11_ThankYouLetter English.docx	Supplementary Document	Uploaded 2022-07-21	Available
Att 11_ThankYouLetter English.docx	Supplementary Document	Uploaded 2022-07-21	Repair queued
Att 3_List of Sites_May23.docx	Supplementary Document	Uploaded 2023-05-25	Available
Att 3_List of Sites_May23.docx	Supplementary Document	Uploaded 2023-05-25	Repair queued
Att 2_60 Day OMB.pdf	Supplementary Document	Uploaded 2022-07-21	Available
Att 2_60 Day OMB.pdf	Supplementary Document	Uploaded 2022-07-21	Repair queued
Att 1_Auth Legislation.pdf	Supplementary Document	Uploaded 2022-07-21	Available
Att 1_Auth Legislation.pdf	Supplementary Document	Uploaded 2022-07-21	Repair queued
SupportingStatementPartB full_clean.docx	Supporting Statement B	Uploaded 2022-11-23	Available
SupportingStatementPartB full_clean.docx	Supporting Statement B	Uploaded 2022-11-23	Repair queued
SSA_07132022_updated_clean.docx	Supporting Statement A	Uploaded 2022-11-23	Available
SSA_07132022_updated_clean.docx	Supporting Statement A	Uploaded 2022-11-23	Repair queued

IC Document Collections

Information collection document groups

IC ID	Collection	Type	Status	Form
254790	CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	Form and Instruction	Modified	Follow Up Question for Online Participants (Spanish)
254790	CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	Form and Instruction	Modified	Follow Up Question for Online Participants (English)
254790	CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	Form and Instruction	Modified	Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (English, phone, MA)
254790	CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	Form and Instruction	Modified	CH STRONG KIDS (Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG of KIDS)Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (Spanish, online)
254790	CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	Form and Instruction	Modified	CH STRONG KIDS (Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG of KIDS)Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (English, online)
254790	CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	Form and Instruction	Modified	CH STRONG KIDS (Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG of KIDS)Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (Somali, paper)
254790	CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	Form and Instruction	Modified	Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (Spanish, paper)
254790	CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	Form and Instruction	Modified	CH STRONG KIDS (English, paper)
254790	CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	Form and Instruction	Modified

ICR Details

OMB Control No: 0920-1382	ICR Reference No: 202503-0920-005
Status: Historical Inactive	Previous ICR Reference No: 202310-0920-008
Agency/Subagency: HHS/CDC	Agency Tracking No: 0920-25-0030
Title: [NCBDDD] Population-based Surveillance of Outcomes, Needs, and Well-being of Children and Adolescents with Congenital Heart Defects
Type of Information Collection: No material or nonsubstantive change to a currently approved collection	Common Form ICR:  No
Type of Review Request: Regular
OIRA Conclusion Action: Withdrawn and continue	Conclusion Date: 04/18/2025
Retrieve Notice of Action (NOA)	Date Received in OIRA: 03/28/2025
Terms of Clearance:

table that charts list comparision

	Inventory as of this Action	Requested	Previously Approved
Expiration Date	01/31/2026	01/31/2026	04/30/2025
Responses	2,556	0	2,556
Time Burden (Hours)	852	0	852
Cost Burden (Dollars)	17,184	0	17,184

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Abstract: Data from U.S. state birth defect surveillance systems, or population-based studies derived from them, will be used to identify a population-based sample of children and adolescents 2 to 17 years of age born with congenital heart defects (CHD). Surveys will be mailed to their caregivers inquiring about the child’s cardiac and other healthcare utilization, barriers to health care, quality of life, social and educational outcomes, and transition of care from childhood to adulthood as well as the needs and experiences of caregivers. Collected information will be used to inform current knowledge, allocate resources, develop services, and, ultimately, improve long-term health of children and adolescents born with CHD. This change request is to update instruments based on current executive orders.

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Authorizing Statute(s): US Code: 42 USC 241, 247b-4 and 280g-13 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:
	87 FR 8252	02/14/2022
30-day Notice:	Federal Register Citation:	Citation Date:
	87 FR 43858	07/22/2022
Did the Agency receive public comments on this ICR? Yes

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Number of Information Collection (IC) in this ICR: 1

table that charts list of burden

IC Title	Form No.	Form Name
CH STRONG KIDS (Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS)	0920-1382, 0920-1382, 0920-1382, 0920-1382, 0920-1382, None, None, None	CH STRONG KIDS (English, paper) ,   Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (Spanish, paper) ,   CH STRONG KIDS (Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG of KIDS)Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (Somali, paper) ,   CH STRONG KIDS (Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG of KIDS)Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (English, online) ,   CH STRONG KIDS (Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG of KIDS)Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (Spanish, online) ,   Congenital Heart Survey To Recognize Outcomes, Needs, and wellbeinG of KIDS (English, phone, MA) ,   Follow Up Question for Online Participants (English) ,   Follow Up Question for Online Participants (Spanish)

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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: No

Burden Reduction Due to:

Short Statement:

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Annual Cost to Federal Government: $773,031

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.     Yes

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: 03/28/2025

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