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OMB Control No: 0923-0041	ICR Reference No: 202605-0923-001
Status: Received in OIRA	Previous ICR Reference No: 202408-0923-001
Agency/Subagency: HHS/TSDR	Agency Tracking No: 0923-26-0185
Title: [ATSDR] National Amyotrophic Lateral Sclerosis (ALS) Registry
Type of Information Collection: Revision of a currently approved collection	Common Form ICR: No
Type of Review Request: Regular	Date Submitted to OIRA: 05/12/2026

	Requested	Previously Approved
Expiration Date	36 Months From Approved	07/31/2026
Responses	11,549	11,649
Time Burden (Hours)	1,757	1,763
Cost Burden (Dollars)	0	0

ICR Summary of Burden

	Total Request	Previously Approved	Change Due to Agency Discretion
Annual Number of Responses	11,549	11,649	-100
Annual Time Burden (Hours)	1,757	1,763	-6
Annual Cost Burden (Dollars)	0	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 revision request for PRA clearance aims to enhance the National ALS Registry's value for researchers. Key updates include: expanding the consent form to allow interagency data exchange with Unite Genomics, updating terminology from "gender" to "sex" as required by the EO, and revising biorepository consent and research application forms to clarify genomic data sharing, cell line use, and sample details. This collection is seeking 1751 annual burden hours for three years of approval.

Annual Cost to Federal Government: $3,640,822

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. Yes

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

Agency Contact: Odion Clunis 770 488-0045 lta2@cdc.gov

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