Average annualized change in MS parameters

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Average annualized change in MS parameters

Postby Frank » Wed Jul 25, 2007 8:30 am

Hi,

since a long time I'm looking for data in RRMS about the average...
- annualized relapse rate
- annualized new MRI lesions
- annualized change in EDSS

I also asked my neuro about that but he didnt know.

I'm aware of the fact that in RRMS these parameters may change with dissease duration (e.g. 1 or 15 years from diagnosis), age or sex.
So a reasonable way would be to gether these infomation for a variety of groups (age, sex, etc).

Does anyone of you have any data on that subject?


One curious example was a phase-II laquinimod study where in the placebo group the annualized new MRI lesion count was 9,6 (way too much). I guess the average might be around 1,5 - 2.
Just for example these two different placebo groups (9,6 or 1,5) would shed a completly different light on a drug in trial that reduces the lesion count to, lets say 0,9.
In the fist case its less than 10% of the placebo count in the second case
its sill more than 50%.

I think it would be very important to know about the average values, to evaluate the outcomes of a certain drug-trial.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby gwa » Wed Jul 25, 2007 11:29 am

Frank,

As far as I am aware, there is no "average" parameters for MS patients.

Your doctor was right in that he has no info for giving you a list of years and what to expect.

gwa
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Postby dignan » Wed Jul 25, 2007 11:31 am

Frank, I think if the data is out there, it's the Sylvia Lawry Centre that would have it. I'm not sure if their data is publicly available. Maybe if you contact them and ask for some numbers, they might be able to help.

http://www.msif.org/en/news_press/news/ ... atien.html
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Postby Frank » Wed Jul 25, 2007 12:25 pm

Thanks, I will contact them and will report what I found out...
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Re: Average annualized change in MS parameters

Postby CureOrBust » Thu Jul 26, 2007 1:43 am

Frank wrote:I think it would be very important to know about the average values, to evaluate the outcomes of a certain drug-trial.
Trials have a placebo arm for that specific purpose. Comparing the non placebo arm of a trial to the average general population, I don't think would be scientific, as it does not take into account the placebo effect. Also, most trials have/provide the statistics regarding their effectiveness.
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Postby Frank » Thu Jul 26, 2007 3:10 am

As I described in my first post, the large variability in the placebo arms make it hard to assess the "real" effectivity.

For example if the placebo arm in the study shows a much higher rate (eg lesion count) than the average of an untreated comparable cohort, then this would be suspicious.

How should statistics deal with this problem?


Apart from studies it would be interesting for MS patients to know how severe their MS course is.

To give one example:
-------------------------
If you knew that a matching average patient - eg. interferon treated male RRMS patient, age 30, dissease duration 5 years - has an average relapse rate of 2 per year and you have 4 relapses per year you might want to talk to your neuro about a change in your therapy.


--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Frank » Mon Jul 30, 2007 1:38 pm

I talked/wrote to the "Sylvia Lawry Centre", which has a german branch in Munich.
Unfortunatly they do not have the data I was looking for.

Still they have a statistical tool online that gives everyone access to their database. Which can be found here.

For my personal use I found the output diagrams a bit hard to read and the data was not that useful...

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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here's some info that might help...

Postby DizzyDean » Thu Aug 02, 2007 6:25 pm

http://www.mult-sclerosis.org/msprognosis.html

From memory after I did this research myself many yrs ago I think I recall the averages of "untreated RRMS" were something like 1.2 relapses/yr, 3-5 new non-enhancing lesions/yr, and +0.5 EDSS/yr.

It might be helpful to grab the clinical trial data for each of the CRABT drugs and look at the control arm statistics.
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