ICR Documents

Supporting Statement A Document Date Uploaded SSA National ALS Registry_20191211 clean.docx 12/22/2019 Supporting Statement B Document Date Uploaded SSB National ALS Registry.docx 08/26/2019 Supplementary Documents Title Document Document Type Date Uploaded Authorizing legislation Attach1Public Health Law 110-373.doc Supplementary Document 08/26/2019 60 day FRN Attach2ALS Registry 60 day FRN.pdf Supplementary Document 08/26/2019 Summary of Changes Attach3 Summary of Changes to 0923-0041 ICR 20191203 clean.docx Supplementary Document 12/22/2019 Privacy Statement Attach7Privacy Statement.doc Supplementary Document 08/26/2019 Registry consent Attach8ANational ALS Registry Cnsnt Form.docx Supplementary Document 08/26/2019 Biospecimen consent Attach8BNational ALS Biorepository Cnsnt Frm.docx Supplementary Document 08/26/2019 Postmortem consent Attach8CNational ALS Biorepository (Postmortem) Cnsnt Frm.docx Supplementary Document 08/26/2019 Saliva consent Attach8DNational ALS Biorepository (Saliva) Cnsnt Frm.docx Supplementary Document 08/26/2019 IRB Approval Attach9Current IRB Approval Memo.doc Supplementary Document 08/26/2019 PIA Attach10 Privary Impact Assessment ALS.pdf Supplementary Document 08/26/2019 Saliva collection instructions Attach12BSaliva Collection Inst 20161024.pdf Supplementary Document 08/26/2019 National ALS Biorepository Reoprt Attach14Birpstry Pilot Stdy Rprt.pdf Supplementary Document 08/26/2019 May 2021 Markup Showing Changes to the ALS Registry Research Application Form Attach_11A-ALS Registry Research Application Form revised 12022020.docx Supplementary Document 05/18/2021 May 2021 Screenshot of Webpage for the ALS Registry Research Application Form Researcher Application Webpage_Changes highlighted.jpg Supplementary Document 05/18/2021 May 2021 CHANGE REQUEST COVID-19 Restart Plan Appendix B6a COVID-19 Restart Plan 04282021.docx Supplementary Document 05/18/2021 May 2021 CHANGE REQUEST COVID-19 Biorepository Information Sheet Appendix B6b COVID-19 Biorepostiory Infomation Sheet_042821.docx Supplementary Document 05/18/2021 May 2021 CHANGE REQUEST ALS Biorepository Protocol with COVID-19 Restart Plan (clean) Appendix S - ALSBiorepository_Protocol-COVID-19 Restart Plan v1 clean.docx Supplementary Document 05/18/2021 May 2021 CHANGE REQUEST ALS Biorepository Protocol with COVID-19 Restart Plan (tracked changes) Appendix S - ALSBiorepository_Protocol-Amendment 6- v2 track changes (1).docx Supplementary Document 05/18/2021 Essential Questionnaire _ Clinical Factprs EssentialQuestionnaire_Clinical Factors.png Supplementary Document 08/16/2021 Essential Questionnaire _ Demography EssentialQuestionnaire_Demography.png Supplementary Document 08/16/2021 Essential Questionnaire _ LifeStyleFactors EssentialQuestionnaire_LifeStyleFactors .png Supplementary Document 08/16/2021 Essential Questionnaire _ Environmental Factors EssentialQuestionnaire_EnvironmentalFactors.png Supplementary Document 08/16/2021 ALS Registry Protocol ALS Registry Protocol V23e_clean.docx Supplementary Document 08/16/2021 Appendix E- Surveys_v3 APPENDIX E - Surveys_mh_v3_Clean_updated2.docx Supplementary Document 08/16/2021 NCHS Survey Feedback 2020 NCHS survey feedback_2020.docx Supplementary Document 08/16/2021 May 2021 CHANGE REQUEST Overview of changes to Sample Request Form and COVID-19 Precautions 0923-0041 Change Request Justification 07192021_v4 clean.docx Justification for No Material/Nonsubstantive Change 07/22/2021 Change Request Justification (Proposal to Release State Level Date, New Data) 0923-0041_Change_Request_Justification_Survey_State_Data_and_New_Sources_062020[1].docx Justification for No Material/Nonsubstantive Change 08/11/2021 Public Comments Author Name Comment Document Author Affiliation Sponsoring Org. Type Category Date of Comment Date Comment Received