[ATSDR] National Amyotrophic Lateral Sclerosis (ALS) Registry

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 revision adds an organized sports participation survey, and 2 additional questions to the registration form.

The latest form for [ATSDR] National Amyotrophic Lateral Sclerosis (ALS) Registry expires 2023-01-31 and can be found here.

Latest Forms, Documents, and Supporting Material

Document Name
Incentives Pilot Project Sign Up form – Only for Texas Registrants Form and Instruction
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 - ALS-associated and Clinical Factors Form and Instruction
Follow-up Questions - Environmental Factors Form and Instruction
Follow-up Questions - Environmental Factors Form and Instruction
Follow-up Questions - Lifestyle Information Form and Instruction
Follow-up Questions - Lifestyle Information Form and Instruction
Follow-up Questions - Demography Form and Instruction
Follow-up Questions - Demography Form and Instruction
ALS Biorepository Collection Form- Saliva Form
ALS Biorepository Collection Form- Saliva Form
National Office Outreach Reporting Form
National Office Outreach Reporting Form
Outreach Reporting Form for Chapters and Districts Form
Outreach Reporting Form for Chapters and Districts Form
Annual Update for Projects Receiving Specimens or Data Form
Annual Update for Projects Receiving Specimens or Data Form
ALS Registry Research Application Form and Instruction
ALS Registry Research Application Form and Instruction
ALS Biorepository Specimen Processing Form
ALS Biorepository Specimen Processing Form
ALS DIsease Progression Survey Form
ALS DIsease Progression Survey Form
Essential Questionnaire Form and Instruction
Essential Questionnaire Form and Instruction
ALS Case Registration Form
ALS Case Registration Form
ALS Validation Questions Form
ALS Validation Questions Form
0923-0041 Change Request Justification 05172024_V1.docx Justification for No Material/Nonsubstantive Change
0923-0041 Change Request Justification 05172024_V1.docx Justification for No Material/Nonsubstantive Change
Appendix U - Incentives Pilot Proposal - New.docx Supplementary Document
Appendix U - Incentives Pilot Proposal - New.docx Supplementary Document
P_AppS.B-6b COVID-19 Biorepostiory InfoSht_042821.docx Supplementary Document
P_AppS.B-6b COVID-19 Biorepostiory InfoSht_042821.docx Supplementary Document
P_AppS.B-6a COVID-19 Restart Plan 04282021.docx Supplementary Document
P_AppS.B-6a COVID-19 Restart Plan 04282021.docx Supplementary Document
P_AppF Privacy Statement.docx Supplementary Document
P_AppF Privacy Statement.docx Supplementary Document
P_AppE7 NCHS Comments Surveys.docx Supplementary Document
P_AppE7 NCHS Comments Surveys.docx Supplementary Document
P_AppE - Survey Introduction_final.docx Supplementary Document
P_AppE - Survey Introduction_final.docx Supplementary Document
P_AppD4 Biorepository Saliva Consent.docx Supplementary Document
P_AppD4 Biorepository Saliva Consent.docx Supplementary Document
P_AppD3 Biorepository Postmortem Consent.docx Supplementary Document
P_AppD3 Biorepository Postmortem Consent.docx Supplementary Document
P_AppD2 Biorepository Consent.docx Supplementary Document
P_AppD2 Biorepository Consent.docx Supplementary Document
Appendix D - Consent Forms - Clean.docx Supplementary Document
Appendix D - Consent Forms - Clean.docx Supplementary Document
0 - List of Attach and Append.docx Supplementary Document
0 - List of Attach and Append.docx Supplementary Document
Att9 Prevalence Rate State 4yr avg.xlsx Supplementary Document
Att9 Prevalence Rate State 4yr avg.xlsx Supplementary Document
Att8 Survey Burden Calculation.docx Supplementary Document
Att8 Survey Burden Calculation.docx Supplementary Document
Att7 Biorepository Pilot Study Report.pdf Supplementary Document
Att7 Biorepository Pilot Study Report.pdf Supplementary Document
Att5 Privacy Impact Assessment 2020.pdf Supplementary Document
Att5 Privacy Impact Assessment 2020.pdf Supplementary Document
Att4 IRB Approval Memo.docx Supplementary Document
Att4 IRB Approval Memo.docx Supplementary Document
Att3 Summary of Changes.docx Supplementary Document
Att3 Summary of Changes.docx Supplementary Document
Att2 60-day FRN.pdf Supplementary Document
Att2 60-day FRN.pdf Supplementary Document
Att1 Public Law 110-373.docx Supplementary Document
Att1 Public Law 110-373.docx Supplementary Document
0- SSB National ALS Registry.docx Supporting Statement B
0- SSB National ALS Registry.docx Supporting Statement B
0-SSA National ALS Registry - Clean.docx Supporting Statement A
0-SSA National ALS Registry - Clean.docx Supporting Statement A
Incentives Pilot Project Sign Up form – Only for Texas Registrants Form and Instruction
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 - ALS-associated and Clinical Factors Form and Instruction
Follow-up Questions - Environmental Factors Form and Instruction
Follow-up Questions - Environmental Factors Form and Instruction
Follow-up Questions - Lifestyle Information Form and Instruction
Follow-up Questions - Lifestyle Information Form and Instruction
Follow-up Questions - Demography Form and Instruction
Follow-up Questions - Demography Form and Instruction
ALS Biorepository Collection Form- Saliva Form
ALS Biorepository Collection Form- Saliva Form
National Office Outreach Reporting Form
National Office Outreach Reporting Form
Outreach Reporting Form for Chapters and Districts Form
Outreach Reporting Form for Chapters and Districts Form
Annual Update for Projects Receiving Specimens or Data Form
Annual Update for Projects Receiving Specimens or Data Form
ALS Registry Research Application Form and Instruction
ALS Registry Research Application Form and Instruction
ALS Biorepository Specimen Processing Form
ALS Biorepository Specimen Processing Form
ALS DIsease Progression Survey Form
ALS DIsease Progression Survey Form
Essential Questionnaire Form and Instruction
Essential Questionnaire Form and Instruction
ALS Case Registration Form
ALS Case Registration Form
ALS Validation Questions Form
ALS Validation Questions Form

All Historical Document Collections

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.