Information Collection Request
[ATSDR] National Amyotrophic Lateral Sclerosis (ALS) Registry
ICR 202408-0923-001 · OMB 0923-0041 · Active
⚠️ Notice: This information collection may be outdated. More recent filings for OMB 0923-0041 can be found here:
Forms and Documents
| Document | Type | Status | Availability |
|---|---|---|---|
 Incentives Pilot Project Sign Up form – Only for Texas Registrants |
Form and Instruction | New | Repair queued |
| Incentives Pilot Project Sign Up form – Only for Texas Registrants |
Form and Instruction | New | Repair queued |
| Follow-up Questions - ALS-associated and Clinical Factors |
Form and Instruction | Unchanged | Repair queued |
| Follow-up Questions - ALS-associated and Clinical Factors |
Form and Instruction | Unchanged | Missing upstream |
| Follow-up Questions - Environmental Factors |
Form and Instruction | Unchanged | Available |
| Follow-up Questions - Environmental Factors |
Form and Instruction | Unchanged | Repair queued |
| Follow-up Questions - Lifestyle Information |
Form and Instruction | Unchanged | Available |
| Follow-up Questions - Lifestyle Information |
Form and Instruction | Unchanged | Missing upstream |
| Follow-up Questions - Demography |
Form and Instruction | Unchanged | Available |
| Follow-up Questions - Demography |
Form and Instruction | Unchanged | Repair queued |
| ALS Biorepository Collection Form- Saliva |
Form | Unchanged | Available |
| ALS Biorepository Collection Form- Saliva |
Form | Unchanged | Repair queued |
| National Office Outreach Reporting |
Form | Unchanged | Available |
| National Office Outreach Reporting |
Form | Unchanged | Repair queued |
| Outreach Reporting Form for Chapters and Districts |
Form | Unchanged | Available |
| Outreach Reporting Form for Chapters and Districts |
Form | Unchanged | Missing upstream |
| Annual Update for Projects Receiving Specimens or Data |
Form | Unchanged | Repair queued |
| Annual Update for Projects Receiving Specimens or Data |
Form | Unchanged | Repair queued |
| ALS Registry Research Application |
Form and Instruction | Unchanged | Repair queued |
| ALS Registry Research Application |
Form and Instruction | Unchanged | Repair queued |
| ALS Biorepository Specimen Processing |
Form | Unchanged | Available |
| ALS Biorepository Specimen Processing |
Form | Unchanged | Repair queued |
| ALS DIsease Progression Survey |
Form | Unchanged | Available |
| ALS DIsease Progression Survey |
Form | Unchanged | Repair queued |
| Essential Questionnaire |
Form and Instruction | Unchanged | Available |
| Essential Questionnaire |
Form and Instruction | Unchanged | Repair queued |
| ALS Case Registration |
Form | Unchanged | Repair queued |
| ALS Case Registration |
Form | Unchanged | Repair queued |
| ALS Validation Questions |
Form | Unchanged | Repair queued |
| ALS Validation Questions |
Form | Unchanged | Repair queued |
 0923-0041 Change Request Justification 05172024_V1.docx |
Justification for No Material/Nonsubstantive Change | Uploaded 2024-08-02 | Repair queued |
| 0923-0041 Change Request Justification 05172024_V1.docx |
Justification for No Material/Nonsubstantive Change | Uploaded 2024-08-02 | Repair queued |
| Appendix U - Incentives Pilot Proposal - New.docx |
Supplementary Document | Uploaded 2024-08-02 | Available |
| Appendix U - Incentives Pilot Proposal - New.docx |
Supplementary Document | Uploaded 2024-08-02 | Repair queued |
| P_AppS.B-6b COVID-19 Biorepostiory InfoSht_042821.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| P_AppS.B-6b COVID-19 Biorepostiory InfoSht_042821.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| P_AppS.B-6a COVID-19 Restart Plan 04282021.docx |
Supplementary Document | Uploaded 2023-01-17 | Available |
| P_AppS.B-6a COVID-19 Restart Plan 04282021.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| P_AppF Privacy Statement.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| P_AppF Privacy Statement.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| P_AppE7 NCHS Comments Surveys.docx |
Supplementary Document | Uploaded 2023-01-17 | Available |
| P_AppE7 NCHS Comments Surveys.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| P_AppE - Survey Introduction_final.docx |
Supplementary Document | Uploaded 2023-01-17 | Available |
| P_AppE - Survey Introduction_final.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| P_AppD4 Biorepository Saliva Consent.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| P_AppD4 Biorepository Saliva Consent.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| P_AppD3 Biorepository Postmortem Consent.docx |
Supplementary Document | Uploaded 2023-01-17 | Available |
| P_AppD3 Biorepository Postmortem Consent.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| P_AppD2 Biorepository Consent.docx |
Supplementary Document | Uploaded 2023-01-17 | Available |
| P_AppD2 Biorepository Consent.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| Appendix D - Consent Forms - Clean.docx |
Supplementary Document | Uploaded 2024-08-02 | Repair queued |
| Appendix D - Consent Forms - Clean.docx |
Supplementary Document | Uploaded 2024-08-02 | Repair queued |
| 0 - List of Attach and Append.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
| 0 - List of Attach and Append.docx |
Supplementary Document | Uploaded 2023-01-17 | Repair queued |
 Att9 Prevalence Rate State 4yr avg.xlsx |
Supplementary Document | Uploaded 2023-01-12 | Available |
| Att9 Prevalence Rate State 4yr avg.xlsx |
Supplementary Document | Uploaded 2023-01-12 | Repair queued |
| Att8 Survey Burden Calculation.docx |
Supplementary Document | Uploaded 2023-01-12 | Available |
| Att8 Survey Burden Calculation.docx |
Supplementary Document | Uploaded 2023-01-12 | Repair queued |
 Att7 Biorepository Pilot Study Report.pdf |
Supplementary Document | Uploaded 2023-01-12 | Available |
| Att7 Biorepository Pilot Study Report.pdf |
Supplementary Document | Uploaded 2023-01-12 | Repair queued |
| Att5 Privacy Impact Assessment 2020.pdf |
Supplementary Document | Uploaded 2023-01-12 | Available |
| Att5 Privacy Impact Assessment 2020.pdf |
Supplementary Document | Uploaded 2023-01-12 | Repair queued |
| Att4 IRB Approval Memo.docx |
Supplementary Document | Uploaded 2023-01-12 | Available |
| Att4 IRB Approval Memo.docx |
Supplementary Document | Uploaded 2023-01-12 | Repair queued |
| Att3 Summary of Changes.docx |
Supplementary Document | Uploaded 2023-01-12 | Available |
| Att3 Summary of Changes.docx |
Supplementary Document | Uploaded 2023-01-12 | Repair queued |
| Att2 60-day FRN.pdf |
Supplementary Document | Uploaded 2023-01-12 | Repair queued |
| Att2 60-day FRN.pdf |
Supplementary Document | Uploaded 2023-01-12 | Repair queued |
| Att1 Public Law 110-373.docx |
Supplementary Document | Uploaded 2023-01-12 | Repair queued |
| Att1 Public Law 110-373.docx |
Supplementary Document | Uploaded 2023-01-12 | Repair queued |
| 0- SSB National ALS Registry.docx |
Supporting Statement B | Uploaded 2023-01-12 | Repair queued |
| 0- SSB National ALS Registry.docx |
Supporting Statement B | Uploaded 2023-01-12 | Repair queued |
| 0-SSA National ALS Registry - Clean.docx |
Supporting Statement A | Uploaded 2024-08-02 | Available |
| 0-SSA National ALS Registry - Clean.docx |
Supporting Statement A | Uploaded 2024-08-02 | Repair queued |
IC Document Collections
Incentives Pilot Project Sign Up form – Only for Texas RegistrantsICR Details
| Status | Active |
|---|---|
| Agency/Subagency | HHS/TSDR |
| OMB Control No | 0923-0041 |
| Type of Information Collection | No material or nonsubstantive change to a currently approved collection |
| Previous ICR Reference No | 202301-0923-001 |
| Agency Tracking No | 0923-0041-24HW |
| Date Submitted to OIRA | 2024-08-05 |
| Requested Expiration Date | 1969-12-31 |