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Old 07-01-2007, 08:53 AM
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BobbyB BobbyB is offline
In Remembrance
Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
BobbyB BobbyB is offline
In Remembrance
BobbyB's Avatar
Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
Thumbs Up where our numbers come from

Hi Bobby,
Thanks for sharing this... it confirms the need for a national registry even
more. The ALS Registry Act that we are working so hard on should go a long
way towards answering our questions.
Best regards,

Jerry Dawson
The ALS Association
Jim "Catfish" Hunter Chapter
120-101 Penmarc Drive
Raleigh, NC 27603

919.755.9001 (P)
919.755.0910 (F)
877.568.4347 (Toll Free)

PS. In 2004, a friend with ALS in SC asked me where our numbers come from
so I did some digging. I compiled the information in an email that I sent
to him. This is the body of the email:

If we can show that the incidence and prevalence of ALS is higher than the
reported data then we can make a much stronger case for increased funding
from the NIH and other sources.

Accurate epidemiological studies begin with accurate case ascertainment,
which in turn depends on correctly diagnosing the disease. Study data are
not absolute due to other factors such as the sampling method and the fact
that there is no mandatory reporting for ALS (as you pointed out). However,
the studies have been rigorous and they all indicate stable incidence and
prevalence of ALS both geographically and over a significant number of

1. Data sources for incidence, prevalence and mortality rates per 100,000
. Western Washington State, 1990-1995, McGuire, Longstreth
(Neurology 47, August 1996, pp. 571-573)
. Harris County Texas Study, 1955-1988, published report,
. Olmstead County Minnesota study, 1925-1984, Kurland
2. Census data is from the US 2000 census: Total population of 281,421,906

3. Consultants to ALSA National Office Staff were:
. Leonard Kurland, MD, PhD, Emeritus Professor of
Epidemiology, Mayo Clinic
. Lorene Nelson, PhD, Neuroepidemiologist, Stanford University

. Walter Bradley, MD, FRCP, University of Miami School of

Ongoing and new efforts in ALS Epidemiology
1. Five US studies in Olmstead County; Harris County; NIH funded
Northern California study; Department of Defense/VA study of ALS
among Gulf War active duty personnel.
2. Kelly AFB
3. ATSDR (Agency for Toxic Substances and Disease Registry)
4. Kaiser study

The prevalence of ALS in the US is said to be 6 to 8 per 100,000 population.
Using the higher prevalence number, the total would be nearly 22,800
Americans with ALS at any give time. However, because many in the ALS
community believe that the prevalence is somewhat, if not significantly
higher, ALSA's Board of Trustees determined that in ALSA's literature, the
prevalence should be stated as follows:

"As many as 30,000 Americans may have ALS at any given time."

The actual number could be much higher considering the typical age of onset
and the number of baby boomers entering their 50-60's. Other
factors/obstacles include mis-diagnosis and elderly deaths that were never

The number that I report for NC & SC is actually in line with the
statistically supported prevalence data of 6-8 per 100,000 population. Had
I based our numbers on the estimated 30,000 Americans, the number would
increase by 300. See figures below:

ALS cases based on 6-8 per 100,000

Population: 284,796,887
ALS cases: 17,088 to 22,784

Population: 8,635,000
ALS cases: 518 to 690

Population: 4,000,000
ALS cases: 240 to 320

Combined NC & SC:
Population: 12,635,000
ALS Cases: 758 to 1,010

Numbers Based on (30,000) US Cases
US Population: 284,796,887
30,000 per 284,796,887
Coefficient: 0.000105 or 0.0105%

NC: 8,635,000(0.000105) = 906
SC: 4,000,000(0.000105) = 420
Total: 1326

As for your suggestion to total all the cases from each Chapter...
This is done annually. The numbers are significantly less than the 30,000
due to reporting/collection problems previously mentioned and HIPPA laws.

I think it is safe to conclude the following:
The incidence and prevalence numbers that we have (while not perfect) are
supported by the data that we have. We will not have irrefutable numbers
until we mandate ALS as a reportable disease and establish adequate funding,
people and systems to analyze and monitor collected data and follow-up with
sanctions for unreported cases.

-----Original Message-----
From: Bobby []
Sent: Tuesday, June 26, 2007 2:01 PM
To:; Jeff; Susan Reinhardt
Subject: ALS Counts Home


ALS/MND Registry

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