National Amyotrophic Lateral Sclerosis (ALS) Registry

ICR 201002-0923-001

OMB: 0923-0041

Federal Form Document

Forms and Documents
Document
Name
Status
Form
New
Form
New
Form
New
Form
New
Supplementary Document
2010-07-08
Supplementary Document
2010-07-08
Supporting Statement B
2010-07-08
Supplementary Document
2010-01-20
Supplementary Document
2010-01-20
Supplementary Document
2010-01-20
Supplementary Document
2010-01-20
Supplementary Document
2010-01-20
Supplementary Document
2010-01-20
Supplementary Document
2010-01-20
Supplementary Document
2010-01-20
Supplementary Document
2010-01-20
Supporting Statement A
2010-07-08
IC Document Collections
IC ID
Document
Title
Status
192032 New
192031 New
192030 New
192029 New
ICR Details
0923-0041 201002-0923-001
Historical Active
HHS/TSDR
National Amyotrophic Lateral Sclerosis (ALS) Registry
New collection (Request for a new OMB Control Number)   No
Regular
Approved with change 07/19/2010
Retrieve Notice of Action (NOA) 02/18/2010
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/CDC’s 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
07/31/2013 36 Months From Approved
29,339 0 0
2,300 0 0
0 0 0

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.

PL: Pub.L. 110 - 373 2 Name of Law: Amendment to the Public Health Service Act
  
None

Not associated with rulemaking

  74 FR 25552 05/29/2009
75 FR 4568 01/28/2010
Yes

4
IC Title Form No. Form Name
ALS Validation Questions No number ALS Validation Questions
ALS Registration No number ALS Registration
ALS One-time Survey No number ALS Survey Modules
ALS Twice Yearly Survey No number ALS Survey Modules

  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
Yes
Miscellaneous Actions
No
This is a request for a new data collection.

$800,000
Yes Part B of Supporting Statement
No
No
Uncollected
No
Uncollected
Maryam Daneshvar 4046394604

  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:
 
 
 
 
 
 
 
    (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;
 
 
 
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.
02/18/2010


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