Re: Observational Database

[Guest guest]

At 09:05 PM 6/15/2003 -0400, Krzysztof Krakowiak wrote:

>This effort would only make sense if responses could be verified.

>Guidelines establishing inclusion requirements would need to be put in

>place. Respondents' identity would have to be confirmed by data collectors

>in order to exclude those not meeting the inclusion criteria.

>I'd be happy to help you out with collating the data. I am a CPA, so

>numbers are not foreign to me

>Chris

Hi Chris--

Thanks for the offer! The first step to collating the data is first

developing a list of the currently used methods to offset lipoatrophy. Does

such a list exist? E.g., SilSkin, New-Fill, Bio-Alcamid.

A brief description of the intervention would be next.

Then we can have three sections: positive, negative and mixed. In the

latter, I'm thinking along the lines of " it worked really well, but cost an

enormous amount and didn't last. " Or we could list the pros and cons as

provided by each respondent.

As to verifying responses, I think this makes sense. The easiest to deal

with will be those who are willing to simply put their names up. The harder

will be those that wish to remain anonymous. What would be the best

mechanism to address that? Should we use a unique identifier system?

Would FIAR need to acquire any security software to preserve any personal

information people might share? We will be looking into these issues as we

are starting to set up a membership program and wish to maintain the

highest standards for preserving privacy.

Is anyone else interested in helping? Any ideas, thoughts, suggestions are

greatly appreciated.

M.

[Guest guest]

The more I think about this project the more skeptical I become about its

outcome. Surveys rely on self-reporting. Intentional deception, poor

understanding of the question, and more importantly, lack of standardized

classification of various degrees of facial wasting may all contribute to

inaccuracies in the data. Inaccurate data can be misleading. I'd be very

concerned about disseminating such results. How would you overcome these

obstacles to obtain meaningful data?

Chris

Re: Observational Database

> At 09:05 PM 6/15/2003 -0400, Krzysztof Krakowiak wrote:

> >This effort would only make sense if responses could be verified.

> >Guidelines establishing inclusion requirements would need to be put in

> >place. Respondents' identity would have to be confirmed by data

collectors

> >in order to exclude those not meeting the inclusion criteria.

> >I'd be happy to help you out with collating the data. I am a CPA, so

> >numbers are not foreign to me

> >Chris

>

> Hi Chris--

>

> Thanks for the offer! The first step to collating the data is first

> developing a list of the currently used methods to offset lipoatrophy.

Does

> such a list exist? E.g., SilSkin, New-Fill, Bio-Alcamid.

>

> A brief description of the intervention would be next.

>

> Then we can have three sections: positive, negative and mixed. In the

> latter, I'm thinking along the lines of " it worked really well, but cost

an

> enormous amount and didn't last. " Or we could list the pros and cons as

> provided by each respondent.

>

> As to verifying responses, I think this makes sense. The easiest to deal

> with will be those who are willing to simply put their names up. The

harder

> will be those that wish to remain anonymous. What would be the best

> mechanism to address that? Should we use a unique identifier system?

>

> Would FIAR need to acquire any security software to preserve any personal

> information people might share? We will be looking into these issues as we

> are starting to set up a membership program and wish to maintain the

> highest standards for preserving privacy.

>

> Is anyone else interested in helping? Any ideas, thoughts, suggestions are

> greatly appreciated.

>

> M.

>

[Guest guest]

At 07:36 AM 6/16/2003 -0400, you wrote:

>The more I think about this project the more skeptical I become about its

>outcome. Surveys rely on self-reporting. Intentional deception, poor

>understanding of the question, and more importantly, lack of standardized

>classification of various degrees of facial wasting may all contribute to

>inaccuracies in the data. Inaccurate data can be misleading. I'd be very

>concerned about disseminating such results. How would you overcome these

>obstacles to obtain meaningful data?

Your questions are important. I was more thinking of this as being a place

to organize all the data and experiences of people on the lipodystrophy

list. It is NOT intended to be definitive data--but rather a collation of

people's experiences. Yes, there is a potential for intentional deception.

I think we can minimize that risk.

The intention is to help guide people's choices, should they consider

undertaking one of the various procedures outlined here. The assistance

that others could provide would be to simply share those experiences, as

they have been doing here.

It will be imperfect--but it may lead to other, better designed studies of

these approaches. It may help people to avoid pitfalls.

In addition, the better physicians/practitioners could be highlighted. I

don't believe we could post data on negative experiences with practitioners

unfortunately, as this might lead to litigation. Any references then to

good experiences would have to be caveated in this way.

Clearly, IF this is to be done, it must be done with care. Any project or

study has definite limitations. We must continue to strive to define them,

overcome them where possible, and otherwise be explicit about the

limitations of the data on the web page. If it appears that the limitations

exceed any potential benefit from such a project, then we can abandon the idea.

I look forward to hearing other people's thoughts on the idea.

M.

[Guest guest]

In a message dated 6/17/2003 6:39:57 AM Eastern Daylight Time, lipodystrophy writes:

Your questions are important. I was more thinking of this as being a place

to organize all the data and experiences of people on the lipodystrophy

list. It is NOT intended to be definitive data--but rather a collation of

people's experiences. Yes, there is a potential for intentional deception.

I think we can minimize that risk.

The intention is to help guide people's choices, should they consider

undertaking one of the various procedures outlined here. The assistance

that others could provide would be to simply share those experiences, as

they have been doing here.

It will be imperfect--but it may lead to other, better designed studies of

these approaches. It may help people to avoid pitfalls.

Would some kind of minimal number scale from not good to good, say 1 to 5 along a certain number of pre-identified dimensions, say lumpiness vs.smoothness, filling of cavities, pain, swelling, time to stabilized effect, plus durability judged after x months, help to make the observations more comparable and thus more informative?

Bob