[ATSDR] National Amyotrophic Lateral Sclerosis (ALS) Registry

ICR 202408-0923-001

OMB: 0923-0041

Federal Form Document

Forms and Documents

Document Name	Status
Incentives Pilot Project Sign Up form – Only for Texas Registrants Form and Instruction	New
Incentives Pilot Project Sign Up form – Only for Texas Registrants Form and Instruction	New
Follow-up Questions - ALS-associated and Clinical Factors Form and Instruction	Unchanged
Follow-up Questions - ALS-associated and Clinical Factors Form and Instruction	Unchanged
Follow-up Questions - Environmental Factors Form and Instruction	Unchanged
Follow-up Questions - Environmental Factors Form and Instruction	Unchanged
Follow-up Questions - Lifestyle Information Form and Instruction	Unchanged
Follow-up Questions - Lifestyle Information Form and Instruction	Unchanged
Follow-up Questions - Demography Form and Instruction	Unchanged
Follow-up Questions - Demography Form and Instruction	Unchanged
ALS Biorepository Collection Form- Saliva Form	Unchanged
ALS Biorepository Collection Form- Saliva Form	Unchanged
National Office Outreach Reporting Form	Unchanged
National Office Outreach Reporting Form	Unchanged
Outreach Reporting Form for Chapters and Districts Form	Unchanged
Outreach Reporting Form for Chapters and Districts Form	Unchanged
Annual Update for Projects Receiving Specimens or Data Form	Unchanged
Annual Update for Projects Receiving Specimens or Data Form	Unchanged
ALS Registry Research Application Form and Instruction	Unchanged
ALS Registry Research Application Form and Instruction	Unchanged
ALS Biorepository Specimen Processing Form	Unchanged
ALS Biorepository Specimen Processing Form	Unchanged
ALS DIsease Progression Survey Form	Unchanged
ALS DIsease Progression Survey Form	Unchanged
Essential Questionnaire Form and Instruction	Unchanged
Essential Questionnaire Form and Instruction	Unchanged
ALS Case Registration Form	Unchanged
ALS Case Registration Form	Unchanged
ALS Validation Questions Form	Unchanged
ALS Validation Questions Form	Unchanged
0923-0041 Change Request Justification 05172024_V1.docx Justification for No Material/Nonsubstantive Change	2024-08-02
0923-0041 Change Request Justification 05172024_V1.docx Justification for No Material/Nonsubstantive Change	2024-08-02
Appendix U - Incentives Pilot Proposal - New.docx Supplementary Document	2024-08-02
Appendix U - Incentives Pilot Proposal - New.docx Supplementary Document	2024-08-02
P_AppS.B-6b COVID-19 Biorepostiory InfoSht_042821.docx Supplementary Document	2023-01-17
P_AppS.B-6b COVID-19 Biorepostiory InfoSht_042821.docx Supplementary Document	2023-01-17
P_AppS.B-6a COVID-19 Restart Plan 04282021.docx Supplementary Document	2023-01-17
P_AppS.B-6a COVID-19 Restart Plan 04282021.docx Supplementary Document	2023-01-17
P_AppF Privacy Statement.docx Supplementary Document	2023-01-17
P_AppF Privacy Statement.docx Supplementary Document	2023-01-17
P_AppE7 NCHS Comments Surveys.docx Supplementary Document	2023-01-17
P_AppE7 NCHS Comments Surveys.docx Supplementary Document	2023-01-17
P_AppE - Survey Introduction_final.docx Supplementary Document	2023-01-17
P_AppE - Survey Introduction_final.docx Supplementary Document	2023-01-17
P_AppD4 Biorepository Saliva Consent.docx Supplementary Document	2023-01-17
P_AppD4 Biorepository Saliva Consent.docx Supplementary Document	2023-01-17
P_AppD3 Biorepository Postmortem Consent.docx Supplementary Document	2023-01-17
P_AppD3 Biorepository Postmortem Consent.docx Supplementary Document	2023-01-17
P_AppD2 Biorepository Consent.docx Supplementary Document	2023-01-17
P_AppD2 Biorepository Consent.docx Supplementary Document	2023-01-17
Appendix D - Consent Forms - Clean.docx Supplementary Document	2024-08-02
Appendix D - Consent Forms - Clean.docx Supplementary Document	2024-08-02
0 - List of Attach and Append.docx Supplementary Document	2023-01-17
0 - List of Attach and Append.docx Supplementary Document	2023-01-17
Att9 Prevalence Rate State 4yr avg.xlsx Supplementary Document	2023-01-12
Att9 Prevalence Rate State 4yr avg.xlsx Supplementary Document	2023-01-12
Att8 Survey Burden Calculation.docx Supplementary Document	2023-01-12
Att8 Survey Burden Calculation.docx Supplementary Document	2023-01-12
Att7 Biorepository Pilot Study Report.pdf Supplementary Document	2023-01-12
Att7 Biorepository Pilot Study Report.pdf Supplementary Document	2023-01-12
Att5 Privacy Impact Assessment 2020.pdf Supplementary Document	2023-01-12
Att5 Privacy Impact Assessment 2020.pdf Supplementary Document	2023-01-12
Att4 IRB Approval Memo.docx Supplementary Document	2023-01-12
Att4 IRB Approval Memo.docx Supplementary Document	2023-01-12
Att3 Summary of Changes.docx Supplementary Document	2023-01-12
Att3 Summary of Changes.docx Supplementary Document	2023-01-12
Att2 60-day FRN.pdf Supplementary Document	2023-01-12
Att2 60-day FRN.pdf Supplementary Document	2023-01-12
Att1 Public Law 110-373.docx Supplementary Document	2023-01-12
Att1 Public Law 110-373.docx Supplementary Document	2023-01-12
0- SSB National ALS Registry.docx Supporting Statement B	2023-01-12
0- SSB National ALS Registry.docx Supporting Statement B	2023-01-12
0-SSA National ALS Registry - Clean.docx Supporting Statement A	2024-08-02
0-SSA National ALS Registry - Clean.docx Supporting Statement A	2024-08-02

IC Document Collections

IC ID	Document Title	Status
269810	Incentives Pilot Project Sign Up form – Only for Texas Registrants Form and Instruction	New
269810	Incentives Pilot Project Sign Up form – Only for Texas Registrants Form and Instruction	New
257949	Follow-up Questions - ALS-associated and Clinical Factors Form and Instruction	Unchanged
257949	Follow-up Questions - ALS-associated and Clinical Factors Form and Instruction	Unchanged
257948	Follow-up Questions - Environmental Factors Form and Instruction	Unchanged
257948	Follow-up Questions - Environmental Factors Form and Instruction	Unchanged
257947	Follow-up Questions - Lifestyle Information Form and Instruction	Unchanged
257947	Follow-up Questions - Lifestyle Information Form and Instruction	Unchanged
257946	Follow-up Questions - Demography Form and Instruction	Unchanged
257946	Follow-up Questions - Demography Form and Instruction	Unchanged
224351	ALS Biorepository Collection Form- Saliva Form	Unchanged
224351	ALS Biorepository Collection Form- Saliva Form	Unchanged
222089	National Office Outreach Reporting Form	Unchanged
222089	National Office Outreach Reporting Form	Unchanged
222088	Outreach Reporting Form for Chapters and Districts Form	Unchanged
222088	Outreach Reporting Form for Chapters and Districts Form	Unchanged
222087	Annual Update for Projects Receiving Specimens or Data Form	Unchanged
222087	Annual Update for Projects Receiving Specimens or Data Form	Unchanged
222085	ALS Registry Research Application Form and Instruction	Unchanged
222085	ALS Registry Research Application Form and Instruction	Unchanged
222083	ALS Biorepository Specimen Processing Form	Unchanged
222083	ALS Biorepository Specimen Processing Form	Unchanged
192032	ALS DIsease Progression Survey Form	Unchanged
192032	ALS DIsease Progression Survey Form	Unchanged
192031	Essential Questionnaire Form and Instruction	Unchanged
192031	Essential Questionnaire Form and Instruction	Unchanged
192030	ALS Case Registration Form	Unchanged
192030	ALS Case Registration Form	Unchanged
192029	ALS Validation Questions Form	Unchanged
192029	ALS Validation Questions Form	Unchanged