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:
201305-0923-004
Status:
Historical Active
Previous ICR Reference No:
201002-0923-001
Agency/Subagency:
HHS/TSDR
Agency Tracking No:
19438
Title:
National Amyotrophic Lateral Sclerosis (ALS) Registry
Type of Information Collection:
Revision of a currently approved collection
Common Form ICR:
No
Type of Review Request:
Regular
OIRA Conclusion Action:
Approved with change
Conclusion Date:
09/12/2013
Retrieve Notice of Action (NOA)
Date Received in OIRA:
05/13/2013
Terms of Clearance:
This collection is approved consistent with the understanding that ATSDR will not be disseminating any prevalence or incidence estimates based solely on the registration component of the Registry. Rather, registration results will be combined with administrative record results prior to dissemination. Any dissemination of such estimates must clearly highlight the significant limitations associated with a) the potential for double counting; b) administrative records coverage; and c) non-response bias in the registry. ATSDR endeavors to improve both the completeness and representativeness of the data over time.
Inventory as of this Action
Requested
Previously Approved
Expiration Date
09/30/2016
36 Months From Approved
09/30/2013
Responses
16,895
0
29,339
Time Burden (Hours)
1,375
0
2,300
Cost Burden (Dollars)
0
0
0
Abstract:
The Agency for Toxic Substances and Disease Registry (ATSDR) requests clearance for continuation of use of the National Amyotrophic Lateral Sclerosis (ALS) Registry. ALS is a complex neurodegenerative disease of unknown etiology, but believed to be the result of a combination of genetic and environmental factors. The revision includes the addition of voluntary risk factor surveys.
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:
78 FR 9922
02/12/2013
30-day Notice:
Federal Register Citation:
Citation Date:
78 FR 26780
05/08/2013
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
none, none
6a - Previously approved surveys
,
6b - New Surveys
ALS Registration
none
ALS Registry Registration
ALS Twice Yearly Survey
none, none
6b - New surveys
,
6a - Previously approved surveys
ALS Validation Questions
none
ALS Registry 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
16,895
29,339
0
-12,444
0
0
Annual Time Burden (Hours)
1,375
2,300
0
-925
0
0
Annual Cost Burden (Dollars)
0
0
0
0
0
0
Burden increases because of Program Change due to Agency Discretion:
No
Burden Increase Due to:
Burden decreases because of Program Change due to Agency Discretion:
Yes
Burden Reduction Due to:
Miscellaneous Actions
Short Statement:
This is a revision request. Change in respondent burden is based on program change. The original application has been revised to include 10 additional risk factor surveys based on the scientific literature. The topics covered by the 10 additional surveys include residential history, life-time occupational exposure, home pesticide use, hobbies, hormonal and reproductive history (women only), caffeine use, trauma, health insurance, open-ended supplemental questions, and clinical signs and symptoms. The activities described are part of the ongoing effort to maintain the National ALS Registry.
Annual Cost to Federal Government:
$1,100,000
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?
Yes
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]?
No
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:
Shari Steinberg 404 639-4942 shari.steinberg@cdc.hhs.gov
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:
05/13/2013
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