Survival Statistics: list of journal papers brief
 

Survival Statistics table - under development

https://goo.gl/XCehle

There is some redundancy in the above table. Where the survival column is a higher number probably the associated patients did not have ALS. The integer in the middle column represents the number of patients in the study. The integer on the right indicates the approximate order I entered the study into this table. The date a study was published and one of the papers authors are indicated along with the approximate geographical area the cases were derived. The survival column is in months.

On blogs
 

one male edition:
Jim Knudson's
https://www.blogger.com/profile/16400328448049587967
(Mechanicsburg, PA)

one female edition:
Sarah Coglianese's
http://www.speed4sarah.com/
(from Oak Park, IL living in San Francisco, CA)

re: Average versus Median
 

The reports regarding survival referenced in the table (whole thread is about the table) of studies rarely show survival rate more than three years for the set of patients . . . :

However:
The Lee (2013) study shows survival at 66.6 months (average) but the study includes 241 patients who were on the tracheostomy.

The Kollewe (2008) study shows 42.8 and I am currently reviewing same (. . . 42.8 is average rather than median).

quote from ALSA's web site taken on March 2, 2016
"Once ALS starts it almost always progresses, eventually taking away the ability to walk, dress, write, speak, swallow, and breathe and shortening the life span. How fast and in what order this occurs is very different from person to person. While the average survival time is 3 years, about twenty percent of people with ALS live five years, 10 percent will survive ten years and five percent will live 20 years or more."

In 2006, Czaplinski, Yen and Appel report on 1034 patients who visited Baylor's ALS center. They found a median of nearly 42 months but could not find efficacy of riluzole in the 430 patients who tried; their data also 'associated' PEG (n=275) and NIV (n=128) with increased risk of death. They appeared to hypothesize their higher median was the product of larger number of young patients and admitted their PEG and NIV numbers might not be sound because their database was not developed to evaluate those technologies. They felt an ALS center being harbored in a medical school probably improved the quality of care patients tended to receive.

Some improvements noted in table, some redundancies remain . . .

quick note, I have seen three studies, one reporting a patient who died two months after symptoms, another three months, and a third after four months but I have yet to see a report to show the 5% at twenty years.

Continuing my review of the data supporting the reports listed in the afore mentioned table; they tend to show the mode for spinal onset ALS is just below three years and bulbar onset around two years. Several of the reports reflect better modes but so far, each involved an unusual number of 'outlier' cases - varying the center of the 'stream.'

The previous post ought to have median rather than mode . . . oops.

National ALS Registry Releases Updated Prevalence Estimates
 

National ALS Registry Releases Updated Prevalence Estimates

National ALS Registry Releases Updated Prevalence Estimates

| CDC Online Newsroom | CDC

Various survival statistics list of journal paper (brief):
Table of ALS datasets