Thursday, August 6, 2009

Who Answered Our Questions Before Google?

Interesting tidbit that my friend Google found... unfortunately not soon enough for the comments period window... but nonetheless it's interesting.

[Federal Register: May 28, 2009 (Volume 74, Number 101)]
[Page 25552-25553]
From the Federal Register Online via GPO Access []
Centers for Disease Control and Prevention

Proposed Data Collections Submitted for Public Comment and
In compliance with the requirement of Section 3506(c)(2)(A) of the
Paperwork Reduction Act of 1995 for opportunity for public comment on
proposed data collection projects, the Centers for Disease Control and
Prevention (CDC) will publish periodic summaries of proposed projects.
To request more information on the proposed projects or to obtain a
copy of the data collection plans and instruments, call 404-639-5960
and send comments to Maryam I. Daneshvar, CDC Acting Reports Clearance
Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333 or send an e-mail
Comments are invited on: (a) Whether the proposed collection of
information is necessary for the proper performance of the functions of
the agency, including whether the information shall have practical
utility; (b) the accuracy of the agency's estimate of the burden of the
proposed collection of information; (c) ways to enhance the quality,
utility, and clarity of the information to be collected; and (d) ways
to minimize the burden of the collection of information on respondents,
including through the use of automated collection techniques or other
forms of information technology. Written comments should be received
within 60 days of this notice.
Proposed Project
Registration of individuals with Amyotrophic Lateral Sclerosis
(ALS) in the National ALS Registry--New--Agency for Toxic Substances
and Disease Registry (ATSDR), Coordinating
[[Page 25553]]
Center for Environmental Health and Injury Prevention (CCEHIP), Centers
for Disease Control and Prevention (CDC).
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 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)
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 potential risks for developing
During a workshop held by The Agency for Toxic Substances and
Disease Registry (ATSDR) in March 2006 to discuss surveillance of
selected autoimmune and neurological diseases, it was decided to
develop a proposal to build on work that had already been done and
coordinate existing datasets to create a larger database, rather than
to start from scratch with medical records review and physician
Four pilot projects were funded to evaluate the accuracy and
reliability of existing data from the Center for Medicare and Medicaid
Services (CMS) and various datasets from the Veterans Administration.
Preliminary results indicate that additional ways to identify cases of
ALS will be necessary to increase completeness of the registry.
Therefore, ATSDR developed a Web site where individuals will register
and will also have the opportunity to provide additional information on
such things as occupation, military service, and family history of ALS,
which is not available in existing records.
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, and family history that would not likely
be available from other sources.
This project proposes 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 will be advertised by ATSDR and
advocacy groups such as the Amyotrophic Lateral Sclerosis Association
(ALSA) and the Muscular Dystrophy Association (MDA).
There will be approximately 30,000 individuals living with ALS when
the National ALS Registry is initiated, and it is estimated that
approximately 25% of those individuals will also participate
. In
addition, approximately 6,000 people are diagnosed with ALS each year
and we expect about one-third of them will participate in the registry.
Because an advantage to registration is participating in the surveys,
we expect the one time surveys, and the twice yearly survey
participation rate will be 50%.
There are no costs to the respondents other than their time.
Estimated Annualized Burden Hours
Number of Average burden
Data collection instruments/respondents Number of responses per per response Total burden
respondents respondent (in hours) (in hours)
Validation questions (Screener) for suspected 6,000 1 2/60 200
ALS cases......................................
Registration Form of ALS cases.................. 4,667 1 7/60 544
Cases of ALS completing 1-time surveys.......... 2,334 6 5/60 1167
Cases of ALS completing twice yearly surveys.... 2,334 2 5/60 389
Total........................................... .............. .............. .............. 2300
Dated: May 20, 2009.
Maryam I. Daneshvar,
Acting Reports Clearance Officer, Centers for Disease Control and
[FR Doc. E9-12397 Filed 5-27-09; 8:45 am]



Anonymous said...

Is it possible to reach a summary to date of where the ALS Registry Act currently stands? Is there any new data available to the public? When and where does the CDC plan to release any new data from the website portal? Also, is it possible to see the comments submitted by the two ALS organizations named as advisers to the ATSDR?

Sleepy said...

Here are the ALSA comments... dated the last day of the comments window. This link was included in the ALSA status report that was emailed yesterday.

The ALSA comments --

The ALSA status report --

Sleepy said...

I hope that if the ALSA suggestions for adding collateral information and tools to the CDC ALS Registry portal are considered, then all agencies (CDC, ALSA, MDA, ALSTDI, Packard Center,...) will review their sites together and eliminate outdated information and redundant efforts.

For example, one definitive source for clinical trial information would serve patients much better than the duplication of efforts that has been built on all of the ALS dot org sites. A simple link or widget to that definitive, well-maintained source would save all patients time and effort.

Is this a time to make the online experience more efficient for 48K visitors wading through the internet looking for help?

Anonymous said...

I have similar questions to Anonymous above. Is there a place where we can get timely and specific status reports and benchmarks for the ALS Registry from the government? If they get $7 mil for FY2010, when can they deliver a working registry?