National Amyotrophic Lateral Sclerosis (ALS) Registry

ICR 201606-0923-001

OMB: 0923-0041

Federal Form Document

Forms and Documents
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Supplementary Document
2016-11-08
Supplementary Document
2016-11-08
Supplementary Document
2016-11-08
Supplementary Document
2016-06-22
Supplementary Document
2016-06-22
Supplementary Document
2016-06-22
Supplementary Document
2016-06-22
Supplementary Document
2016-06-22
Supplementary Document
2016-11-08
Supplementary Document
2016-06-22
Supplementary Document
2016-06-22
Supplementary Document
2016-06-22
Supplementary Document
2016-06-22
Supplementary Document
2016-06-22
Supporting Statement B
2016-11-08
Supporting Statement A
2016-11-08
ICR Details
0923-0041 201606-0923-001
Historical Active 201305-0923-004
HHS/TSDR
National Amyotrophic Lateral Sclerosis (ALS) Registry
Revision of a currently approved collection   No
Regular
Approved with change 11/08/2016
Retrieve Notice of Action (NOA) 07/01/2016
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 of prevalence rates. Furthermore, any research based on registry data should highlight what is known about its lack of representativeness due to its self-selected nature. ATSDR endeavors to improve both the completeness and representativeness of the data over time.
  Inventory as of this Action Requested Previously Approved
11/30/2019 36 Months From Approved 11/30/2016
8,549 0 16,895
1,882 0 1,375
0 0 0

As mandated by Congress, the goal is to continue collecting data for the National Amyotrophic Lateral Sclerosis (ALS) Registry to better describe the incidence and prevalence of ALS and to identify risk factors for the disease. ATSDR endeavors to improve the completeness, representativeness, and accuracy of the Registry data over time. This revision includes the addition of a biospecimine repository and a mechanism for researchers to access data.

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

Not associated with rulemaking

  81 FR 21876 04/13/2016
81 FR 43202 07/01/2016
No

  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 8,549 16,895 0 -8,346 0 0
Annual Time Burden (Hours) 1,882 1,375 0 507 0 0
Annual Cost Burden (Dollars) 0 0 0 0 0 0
Yes
Miscellaneous Actions
No
Revisions include an increase in burden due to the addition of the Global Unique Identifiers, a biorepository, an application for researchers to request specimens and/or data, and the reporting of partners' outreach activities to better measure impact. Burden is off one hour due to rounding.

$3,640,822
Yes Part B of Supporting Statement
Yes
No
No
No
Uncollected
Shari Steinberg 404 639-4942 [email protected]

  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.
07/01/2016


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