[NCBDDD] Documenting Outcomes Associated with Persistent Tic Disorders (Including Tourette Syndrome) in Children, Adolescents, and Young Adults Through Surveillance

Forms and Documents

Document Name	Status
Adult Form Form and Instruction	New
Teen Form Form and Instruction	New
Child 9 - 11 Form Form and Instruction	New
Child 4 - 8 Form Form and Instruction	New
Parent Report (for children ages 4-17) Form and Instruction	New
Att 21_References.docx Supplementary Document	2025-04-29
Att 20_Suicide resources.docx Supplementary Document	2025-04-29
Att 19_Participant Info Sheet_Adult.docx Supplementary Document	2025-04-29
Att 18_Participant Info Sheet_Parent Child.docx Supplementary Document	2025-04-29
Att 17_Intro letter.docx Supplementary Document	2025-04-29
Att 16_Privacy (PIA).pdf Supplementary Document	2025-04-29
Att 15_Research Determination.pdf Supplementary Document	2025-04-29
Att 14_Thank you note.docx Supplementary Document	2025-04-29
Att 13_FY23 Approps letter.pdf Supplementary Document	2025-04-29
Att 12_content by respondent.docx Supplementary Document	2025-04-29
Att 2_60 day FRN.pdf Supplementary Document	2025-04-29
Att 1_Auth Legislation.pdf Supplementary Document	2025-04-29
SSB full package_tics.docx Supporting Statement B	2025-04-29
SSA full package_tics_final.docx Supporting Statement A	2025-04-29

IC Document Collections

IC ID	Document Title	Status
275095	Adult Form Form and Instruction	New
275093	Teen Form Form and Instruction	New
275092	Child 9 - 11 Form Form and Instruction	New
275091	Child 4 - 8 Form Form and Instruction	New
275090	Parent Report (for children ages 4-17) Form and Instruction	New

ICR Details

OMB Control No:	ICR Reference No: 202504-0920-027
Status: Received in OIRA	Previous ICR Reference No:
Agency/Subagency: HHS/CDC	Agency Tracking No: 0920-24EG
Title: [NCBDDD] Documenting Outcomes Associated with Persistent Tic Disorders (Including Tourette Syndrome) in Children, Adolescents, and Young Adults Through Surveillance
Type of Information Collection: New collection (Request for a new OMB Control Number)	Common Form ICR:  No
Type of Review Request: Regular	Date Submitted to OIRA: 06/26/2025

	Requested	Previously Approved
Expiration Date	36 Months From Approved
Responses	700	0
Time Burden (Hours)	500	0
Cost Burden (Dollars)	0	0

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Abstract: This project will collect data to describe the public health impact of persistent tic disorders including Tourette syndrome (PTD/TS) among diverse populations of children, adolescents, and young adults (i.e., aged 4 to 26 years) identified in clinical settings. Data will be collected once from a respondent (i.e., individuals with PTD/TS and their caregiver, if individual is <18 years), via a survey. These data will inform future education and outreach activities.

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Authorizing Statute(s): US Code: 42 USC 241(a) and 247b-4 Name of Law: PHSA
  

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:
	89 FR 24007	04/05/2024
30-day Notice:	Federal Register Citation:	Citation Date:
	90 FR 24797	06/12/2025
Did the Agency receive public comments on this ICR? Yes

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Number of Information Collection (IC) in this ICR: 5

IC Title	Form No.	Form Name
Adult Form	n/a	Adult Form
Child 4 - 8 Form	n/a	Child 4 - 8
Child 9 - 11 Form	n/a	Child 9 - 11
Parent Report (for children ages 4-17)	n/a	Parent Form
Teen Form	n/a	Teen

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ICR Summary of Burden

	Total Request	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	700	0	0	700	0	0
Annual Time Burden (Hours)	500	0	0	500	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 collection.

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Annual Cost to Federal Government: $951,595

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: 06/26/2025

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