List of ICR Attachments and Protocol Appendices*
Attachment 1 Authorizing Legislation: Public Law No. 110-373
Attachment 2 60-Day Federal Register Notice
Attachment 2a. Public Comments
Attachment 3 Summary of Approved Changes since Last ICR Review
Attachment 4 CDC IRB Approval Memo
Attachment 5 Privacy Impact Assessment
Attachment 6 Service Organization Forms
Attachment 6A Outreach Reporting Form for Chapters and Districts
Attachment 6B Outreach Reporting Form for National Offices
Attachment 7 Biorepository Pilot Study Report
Attachment 8 Survey Burden Table Calculation
Attachment 9 Prevalence Rates of ALS by State on 4 Year Avg
ALS Protocol Relevant Appendices (originally labeled as ICR attachments, are renamed as they appear in the research protocol to facilitate IRB review):
Appendix B (org Att4): Validation Questions
Appendix C (org Att5): Create an Account Website Page
Appendix D (org Att8): Consent Forms
App D1 National ALS Registry
App D2 National ALS Biorepository (Biospecimens)
App D3 National ALS Biorepository (Postmortem)
App D4 National ALS Biorepository (Saliva)
Appendix E (org Att6): Survey Introduction
App E1 Essential Questionnaire
App E2 Disease Progression Survey (ALS FRS)
App E3 Follow-up Questions - Demography
App E4 Follow-up Questions - Lifestyle Information
App E5 Follow-up Questions - Environmental Factors
App E6 Follow-up Questions - ALS-associated Clinical Factors
App E7 NCHS Redesign Comments on Follow-up Surveys
Appendix F (org Att7): Privacy Act Statement
Appendix M (org Att11)
App M1 (org 11A) ALS Registry Research Application Form
App M2 (org 11B) Annual Update
Appendix S: Biorepository Protocol
App S.A-1 (org Att12A) ALS Biorepository Specimen Processing Form
App S.A-2 (org Att12B) Biorepository Saliva Collection Instructions
App S.B-6a. Biorepository COVID-19 Safety Procedures and Restart Plan
App S.B-6b. National ALS Biorepository COVID-19 Safety Information Sheet
* Italicized ICR attachments and protocol appendices are information collection forms represented in the burden tables.
| File Type | application/vnd.openxmlformats-officedocument.wordprocessingml.document |
| Author | Punjani, Reshma (ATSDR/OAD/OIA) |
| File Modified | 0000-00-00 |
| File Created | 2024-09-05 |