View Information Collection Request (ICR) Package
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Please note that the OMB number and expiration date may not have been determined when this Information Collection Request and associated Information Collection forms were submitted to OMB. The approved OMB number and expiration date may be found by clicking on the Notice of Action link below.
View ICR - OIRA Conclusion
OMB Control No:
0923-0041
ICR Reference No:
201002-0923-001
Status:
Historical Active
Previous ICR Reference No:
Agency/Subagency:
HHS/TSDR
Agency Tracking No:
Title:
National Amyotrophic Lateral Sclerosis (ALS) Registry
Type of Information Collection:
New collection (Request for a new OMB Control Number)
Common Form ICR:
No
Type of Review Request:
Regular
OIRA Conclusion Action:
Approved with change
Conclusion Date:
07/19/2010
Retrieve Notice of Action (NOA)
Date Received in OIRA:
02/18/2010
Terms of Clearance:
OMB approval for the registry is granted contingent upon ATSDR/CDC agreement not to disseminate statistics describing those in the ALS registry until after the complete baseline (i.e., all cases from all four administrative data sources -Medicare, Medicaid, VHA, and VBA ) have been added to the registry. Clearance is also contingent on ATSDR/CDCs commitment to always clearly articulate the lack of representativeness in the risk factor information that is collected via the self-administered questionnaire, thus the limitations that places on conclusions that might be drawn about associations.
Inventory as of this Action
Requested
Previously Approved
Expiration Date
07/31/2013
36 Months From Approved
Responses
29,339
0
0
Time Burden (Hours)
2,300
0
0
Cost Burden (Dollars)
0
0
0
Abstract:
The Agency for Toxic Substances and Disease Registry (ATSDR) requests clearance for creation of the National Amyotrophic Lateral Sclerosis (ALS) Registry. ALS is a complex neurodegenerative disease of unknown etiology, but is believed to be the result of a combination of genetic and environmental factors.
Authorizing Statute(s):
PL:
Pub.L. 110 - 373 2
Name of Law: Amendment to the Public Health Service Act
Citations for New Statutory Requirements:
None
Associated Rulemaking Information
RIN:
Stage of Rulemaking:
Federal Register Citation:
Date:
Not associated with rulemaking
Federal Register Notices & Comments
60-day Notice:
Federal Register Citation:
Citation Date:
74 FR 25552
05/29/2009
30-day Notice:
Federal Register Citation:
Citation Date:
75 FR 4568
01/28/2010
Did the Agency receive public comments on this ICR?
Yes
Number of Information Collection (IC) in this ICR:
4
IC Title
Form No.
Form Name
ALS One-time Survey
No number
ALS Survey Modules
ALS Registration
No number
ALS Registration
ALS Twice Yearly Survey
No number
ALS Survey Modules
ALS Validation Questions
No number
ALS Validation Questions
ICR Summary of Burden
Total Approved
Previously Approved
Change Due to New Statute
Change Due to Agency Discretion
Change Due to Adjustment in Estimate
Change Due to Potential Violation of the PRA
Annual Number of Responses
29,339
0
0
29,339
0
0
Annual Time Burden (Hours)
2,300
0
0
2,300
0
0
Annual Cost Burden (Dollars)
0
0
0
0
0
0
Burden increases because of Program Change due to Agency Discretion:
Yes
Burden Increase Due to:
Miscellaneous Actions
Burden decreases because of Program Change due to Agency Discretion:
No
Burden Reduction Due to:
Short Statement:
This is a request for a new data collection.
Annual Cost to Federal Government:
$800,000
Does this IC contain surveys, censuses, or employ statistical methods?
Yes
Part B of Supporting Statement
Is the Supporting Statement intended to be a Privacy Impact Assessment required by the E-Government Act of 2002?
No
Is this ICR related to the Affordable Care Act [Pub. L. 111-148 & 111-152]?
No
Is this ICR related to the Dodd-Frank Wall Street Reform and Consumer Protection Act, [Pub. L. 111-203]?
Uncollected
Is this ICR related to the American Recovery and Reinvestment Act of 2009 (ARRA)?
No
Is this ICR related to the Pandemic Response?
Uncollected
Agency Contact:
Maryam Daneshvar 4046394604
Common Form ICR:
No
On behalf of this Federal agency, I certify that the collection of information encompassed by this request complies with 5 CFR 1320.9 and the related provisions of 5 CFR 1320.8(b)(3).
The following is a summary of the topics, regarding the proposed collection of information, that the certification covers:
(a) It is necessary for the proper performance of agency functions;
(b) It avoids unnecessary duplication;
(c) It reduces burden on small entities;
(d) It uses plain, coherent, and unambiguous language that is understandable to respondents;
(e) Its implementation will be consistent and compatible with current reporting and recordkeeping practices;
(f) It indicates the retention periods for recordkeeping requirements;
(g) It informs respondents of the information called for under 5 CFR 1320.8 (b)(3) about:
(i) Why the information is being collected;
(ii) Use of information;
(iii) Burden estimate;
(iv) Nature of response (voluntary, required for a benefit, or mandatory);
(v) Nature and extent of confidentiality; and
(vi) Need to display currently valid OMB control number;
(h) It was developed by an office that has planned and allocated resources for the efficient and effective management and use of the information to be collected.
(i) It uses effective and efficient statistical survey methodology (if applicable); and
(j) It makes appropriate use of information technology.
If you are unable to certify compliance with any of these provisions, identify the item by leaving the box unchecked and explain the reason in the Supporting Statement.
Certification Date:
02/18/2010
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