US ALS Registry - First Data Published

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If you arent eligible for ssdi/medicare and dont self enroll in the registry, do you get counted? Doesnt look like it!
 
If you have a certain number of ALS coded visits you do. Also I think it is one visit plus having had a prescription for riluzole and there might be a couple of other combinations but it is far from perfect
ETA this is inaccurate I apologize. See answers below.
 
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You have to be in Medicare, Medicaid, or VA files to be counted by their passive data mining.

If you're not in one or more of those systems, you'll not be counted unless you self-report on their web portal at CDC - Amyotrophic Lateral Sclerosis (ALS)
 
Actually, no, you wouldn't be counted, correct, unless you were VA or 'caid. There is no one private network administrative claims database (yet -- some are working toward that) that the researchers could search. So they left all of them out so as not to include some and not others. Also, it generally costs $ to have them searched. But most ALS pts qualify for Medicare so that's why they are pretty confident they have the vast majority. I only skimmed the rpt but did not see where they should have broken out how many uniques they got from the Registry alone -- that would be indicative as to how complete the admin dbs that they used were.
 
I don't under stand the report . what are they getting at?
 
It is just a preliminary report about the ALS pts in the US that are now known to the registry and hopefully now doing surveys and getting more data into the [future] biorepository, too: most likely to be white senior males and so on. It is descriptive. It's one of these "this is how we spent our money so far" things -- but helps researchers testing new therapies/strategies ensure that their sampled population is representative, for example. Instead of worrying that a 30-patient study has no black females enrolled, say, they can look at the rpt and say "this is a problem" or "it's not."

As they get survey data, they will publish more about what the data says about possible ALS causes/correlates, for instance; symptoms; treatments used and the like. Some of it is similar to PML with more science/structure behind it. Also, as the rpt states, the Registry is being used to recruit for clinical trials, so people who don't get to a clinic or stay up on the trials will have info pushed to them, which is good.
 
There were 8472 uniques found only in administrative databases.
There were 1926 who were found via web-portal only.
Total were 1789 found in both places.

Total 12187 living PALS found in approximately a 13 month period.



I'm not aware of any intention to introduce private payer data into the algorithm. They did use such back in some of the pilot studies to validate their algorithm.

Without diagnosis dates and onset dates, I don't see how this database can possibly be helpful in any kind of clinical trial contexts.

It also has a long time lag before they can get the Medicare files to mine. That's why we're only seeing data from 2010-2011 right now.
 
Be still, my heart... they're going to webstream the CDC ATSDR Annual Registry meeting next week (starting Wed Aug 8 at 830 am EDT)!

http://new.livestream.com/alsregistrymtg/events/3247245]http://new.livestream.com/alsregistrymtg/events/3247245

The reports from past annual meetings are available at

http://wwwn.cdc.gov/als/ALSAPRReports.aspx]http://wwwn.cdc.gov/als/ALSAPRReports.aspx

If you read them (especially last year's), you'll see that since Persevering died, they don't get many good questions or challenges to the way they're doing things.

I hope that many of the quants here (or those with simple business common sense) will listen in. Dr. Horton of ATSDR indicated to me that he wants ALSA and MDA to nominate the PALS participants in the meeting. I have no clue as to who was invited.

This is a tremendously expensive project (over $40 mil to-date) and I think that it benefits us all to pay attention to what they're doing. Also, keep in mind that ALSA and MDA get very large contracts out of the funds for this project (for "education and outreach"), so it's not likely that any radical new ideas will come from them.

Please listen in and speak out.

Many thanks.

p.s. In the past it has been a completely closed meeting and the minutes don't come out for many months after the meeting. We got a baby step forward with the webcast. Please take advantage.
 
I have the webcast on my calendar. To be fair, at the appointment where I was diagnosed, I was handed an ALSA folder that included information on the registry. I registered in the first week after diagnosis. But as a former researcher in neurobiology (how's that for ironic?), I have an interest in contributing to such things.

I've also been involved in legislative and regulatory issues for years, so webcasts and East Coast meetings are old hat for me. So I put that webcast on my calendar quick-like. :)
 
Dave J from the ALSTDI forum made a good remark on the results. For those who can not access that forum, the post can be read here: use their numbers, not ours.
 
I thought Dr Perrin's comment was pretty telling, too. There is a real question on the expense of the project vs the results.

Reminder... annual meeting Wed starting 830 am EDT

alsregistrymtg on Livestream
 
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