OMB.report

Federal forms, ICRs, and supporting documents

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 2026-08-31 and is listed under ICR 202408-0923-001.

Latest Forms, Documents, and Supporting Material

Latest forms, documents, and information collections
DocumentType
Incentive Project Sign Up FormForm and Instruction
ALS-associated and Clinical FactorsForm and Instruction
Environmental FactorsForm and Instruction
Lifestyle InformationForm and Instruction
DemographyForm and Instruction
ALS Biorepository Saliva CollectionForm
National Office Outreach ReportingForm
Chapter/District Outreach ReportingForm
Annual update for projects receiving specimens and/dataForm
National Amyotrophic Lateral Sclerosis (ALS) Registry Research Application Form (rev. May 2021)Form and Instruction
Biorepository Specimen ProcessingForm
Disease Progression SurveyForm
Essential QuestionnaireForm and Instruction
Case registrationForm
Case validation questionsForm
Attach5 Privacy Impact Assessment.pdfSupplementary Document
Attach6B National Office Outreach Repo.xlsxSupplementary Document
Attach8 Survey Burden Calculation.docxSupplementary Document
Attach7 Biorepository Pilot Summary Report.pdfSupplementary Document
Attach9 Prevalence Rate State 4yr avg.xlsxSupplementary Document
Attach1Public Health Law 110-373.docxSupplementary Document
Attach2a Public Comments Received.docxPublic Comments
Attach3Summary of Changes.docxSupplementary Document
Attach4 IRB 2026 Approval Memo 5768.pdfSupplementary Document
APPENDIX_D1_-_Consent_Forms[1].docxSupplementary Document
0 - 60-day FRN Publication Request Form - Registry 2025.docxSupplementary Document
0923-0041 Change Request Justification 05172024_V1.docxJustification for No Material/Nonsubstantive Change
Appendix U - Incentives Pilot Proposal - New.docxSupplementary Document
Appendix D - Consent Forms - Clean.docxSupplementary Document
0- SSB National ALS Registry 2026.docxSupporting Statement B
0- SSA National ALS Registry 2026.docxSupporting 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

Historical document collections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

OMB Details

ALS Validation Questions

Federal Enterprise Architecture: Health - Public Health Monitoring

Information collection instruments
FormNameElectronic accessType
Form noneCase validation questionsFillable FileableForm

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