[Federal Register Volume 78, Number 89 (Wednesday, May 8, 2013)]
[Notices]
[Pages 26780-26781]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2013-10853]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

[30Day-13-0041]


Agency Forms Undergoing Paperwork Reduction Act Review

    The Centers for Disease Control and Prevention (CDC), Agency for 
Toxic Substances and Disease Registry (ATSDR) publishes a list of 
information collection requests under review by the Office of 
Management and Budget (OMB) in compliance with the Paperwork Reduction 
Act (44 U.S.C. Chapter 35). To request a copy of these requests, call 
the CDC Reports Clearance Officer at (404) 639-7570 or send an email to 
[email protected]. Send written comments to ATSDR Desk Officer, Office of 
Management and Budget, Washington, DC 20503 or by fax to (202) 395-
5806. Written comments should be received within 30 days of this 
notice.

Proposed Project

    National Amyotrophic Lateral Sclerosis (ALS) Registry--Revision 
(0923-0041, Expiration 7/31/13)--Agency for Toxic Substances and 
Disease Registry (ATSDR).

Background and Brief Description

    On October 10, 2008, President Bush signed S. 1382: ALS Registry 
Act which amended the Public Health Service Act to provide for the 
establishment of an Amyotrophic Lateral Sclerosis (ALS) Registry. The 
activities described are part of the effort to create the National ALS 
Registry. The purpose of the registry is to: (1) Better describe the 
incidence and prevalence of ALS in the United States; (2) examine 
appropriate

[[Page 26781]]

factors, such as environmental and occupational, that might be 
associated with the disease; (3) better outline key demographic factors 
(such as age, race or ethnicity, gender, and family history of 
individuals who are diagnosed with the disease) associated with the 
disease; and (4) better examine the connection between ALS and other 
motor neuron disorders that can be confused with ALS, misdiagnosed as 
ALS, and in some cases progress to ALS. The registry will collect 
personal health information that may provide a basis for further 
scientific studies of potentially risks for developing ALS.
    After piloting methodology, on October 18, 2010 the Agency for 
Toxic Substances and Disease Registry (ATSDR) launched the registration 
component of the National ALS Registry.
    The registration portion of the data collection will be limited to 
information that can be used to identify an individual to assure that 
there are not duplicate records for an individual. Avoiding duplication 
of registrants due to obtaining records from multiple sources is 
imperative to get accurate estimates of incidence and prevalence, as 
well as accurate information on demographic characteristics of the 
cases of ALS.
    In addition to questions required for registration, there will be a 
series of short surveys to collect information on such things as 
military history, occupations, residential history, and family history 
that would not likely be available from other sources.
    This project proposes to add 10 additional risk factor surveys 
while continuing to collect information on individuals with ALS which 
can be combined with information obtained from existing sources of 
information. This combined data will become the National ALS Registry 
and will be used to provide more accurate estimates of the incidence 
and prevalence of disease as well as the demographic characteristics of 
the cases. Information obtained from the surveys will be used to better 
characterize potential risk factors for ALS which will lead to further 
in-depth studies.
    The existence of the Web site (http://wwwn.cdc.gov/als) is being 
advertised by ATSDR and advocacy groups such as the Amyotrophic Lateral 
Sclerosis Association (ALSA) and the Muscular Dystrophy Association 
(MDA). There are no costs to the respondents other than their time. The 
estimated annualized burden hours are 1,375.

                                        Estimated Annualized Burden Hours
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                                                                                    Number of     Average burden
         Type of respondent                   Form name             Number of     responses per    per response
                                                                   respondents      respondent      (in hours)
----------------------------------------------------------------------------------------------------------------
Person with ALS....................  Validation questions                 1,670              1              2/60
                                      (Screener) for suspected
                                      ALS cases.
                                     Registration Form of ALS             1,500              1              7/60
                                      cases.
                                     Cases of ALS completing 1-             750             16              5/60
                                      time surveys.
                                     Cases of ALS completing                750              2.3            5/60
                                      twice yearly surveys.
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Ron A. Otten,
Director, Office of Scientific Integrity, Office of the Associate 
Director for Science, Office of the Director, Centers for Disease 
Control and Prevention.
[FR Doc. 2013-10853 Filed 5-7-13; 8:45 am]
BILLING CODE 4163-18-P