OMB control number

[ATSDR] National Amyotrophic Lateral Sclerosis (ALS) Registry

OMB 0923-0041 · HHS/TSDR.

OMB 0923-0041

As mandated by Congress, the goal is to continue collecting data for the National Amyotrophic Lateral Sclerosis (ALS) Registry to better describe the incidence and prevalence of ALS and to identify risk factors for the disease. ATSDR endeavors to improve the completeness, representativeness, and accuracy of the Registry data over time. This change request involves minor changes to a consent form and addition of incentives.

The latest form for [ATSDR] National Amyotrophic Lateral Sclerosis (ALS) Registry expires 2026-06-30 and can be found here.

Latest Forms, Documents, and Supporting Material

Document Name
Incentive Project Sign Up Form Form and Instruction
ALS-associated and Clinical Factors Form and Instruction
Environmental Factors Form and Instruction
Lifestyle Information Form and Instruction
Demography Form and Instruction
ALS Biorepository Saliva Collection Form
National Office Outreach Reporting Form
Chapter/District Outreach Reporting Form
Annual update for projects receiving specimens and/data Form
National Amyotrophic Lateral Sclerosis (ALS) Registry Research Application Form (rev. May 2021) Form and Instruction
Biorepository Specimen Processing Form
Disease Progression Survey Form
Essential Questionnaire Form and Instruction
Case registration Form
Case validation questions Form
Attach5 Privacy Impact Assessment.pdf Supplementary Document
Attach6B National Office Outreach Repo.xlsx Supplementary Document
Attach8 Survey Burden Calculation.docx Supplementary Document
Attach7 Biorepository Pilot Summary Report.pdf Supplementary Document
Attach9 Prevalence Rate State 4yr avg.xlsx Supplementary Document
Attach1Public Health Law 110-373.docx Supplementary Document
Attach2a Public Comments Received.docx Public Comments
Attach3Summary of Changes.docx Supplementary Document
Attach4 IRB 2026 Approval Memo 5768.pdf Supplementary Document
APPENDIX_D1_-_Consent_Forms[1].docx Supplementary Document
0 - 60-day FRN Publication Request Form - Registry 2025.docx Supplementary Document
0923-0041 Change Request Justification 05172024_V1.docx Justification for No Material/Nonsubstantive Change
Appendix U - Incentives Pilot Proposal - New.docx Supplementary Document
Appendix D - Consent Forms - Clean.docx Supplementary Document
0- SSB National ALS Registry 2026.docx Supporting Statement B
0- SSA National ALS Registry 2026.docx Supporting Statement A
Incentives Pilot Project Sign Up form – Only for Texas Registrants Form and Instruction
Follow-up Questions - ALS-associated and Clinical Factors Form and Instruction
Follow-up Questions - Environmental Factors Form and Instruction
Follow-up Questions - Lifestyle Information Form and Instruction
Follow-up Questions - Demography Form and Instruction
ALS Biorepository Collection Form- Saliva Form
National Office Outreach Reporting Form
Outreach Reporting Form for Chapters and Districts Form
Annual Update for Projects Receiving Specimens or Data Form
ALS Registry Research Application Form and Instruction
ALS Biorepository Specimen Processing Form
ALS DIsease Progression Survey Form
Essential Questionnaire Form and Instruction
ALS Case Registration Form
ALS Validation Questions Form

All Historical Document Collections

202605-0923-001	Revision of a currently approved collection	2026-05-12
202408-0923-001 Approved without change	No material or nonsubstantive change to a currently approved collection	2024-08-05
202301-0923-001 Approved without change	Revision of a currently approved collection	2023-01-18
202108-0923-001 Withdrawn and continue	No material or nonsubstantive change to a currently approved collection	2021-08-16
202105-0923-002 Approved with change	No material or nonsubstantive change to a currently approved collection	2021-05-27
201908-0923-003 Approved with change	Revision of a currently approved collection	2019-09-12
201809-0923-001 Approved without change	No material or nonsubstantive change to a currently approved collection	2018-09-11
201606-0923-001 Approved with change	Revision of a currently approved collection	2016-07-01
201305-0923-004 Approved with change	Revision of a currently approved collection	2013-05-13
201002-0923-001 Approved with change	New collection (Request for a new OMB Control Number)	2010-02-18

OMB Details

ALS Validation Questions

Federal Enterprise Architecture: Health - Public Health Monitoring

Form none

Case validation questions

Fillable Fileable

Form

Review document collections for all forms, instructions, and supporting documents - including paper/printable forms.