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Dear List Members,

You were recently invited to participate in a survey and we are asking

you to HOLD OFF for now.

We are excited by the useful possibilities for data collected and

processed in a truly scientific manner. To that end, we have already

contacted professionals who specialize in scientific surveys to help us

create a comprehensive questionnaire that can be used in a number of

ways for the benefit of SCD. We are also in the process of joining

forces with a recognized autism organization which has offered to

assist us in creating a powerful research tool.

The main area of investigation will be links to foods. This means

considerably expanding the parameters of a survey such as the one

recently proposed. We will be using special software which will give

us the ability to tabulate data quickly and efficiently.

The results will enable us to evaluate what is most effective as well

as the role yogurt plays in progress on SCD.

We will update you when the survey is ready to be launched. We are

extremely optimistic about this opportunity to document the

effectiveness of SCD for Pecanbread members and the autism community.

Carol F.

SCD 6 years

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This is good news. Speaking as a statistician, I'm sure your

statisticians have advised you that your study results are only as

good as the representativeness of the population that you are

sampling from and the size of your sample. You want to get a good

representation of all people who have tried SCD - those for whom it

has worked as well as those for whom it hasn't. To limit your sample

to just the members of this list means the survey will probably self-

select for people for whom the diet has succeeded, which wouldn't be

realistic or scientifically accurate.

It will be important to include people who tried SCD and abandoned

it and a representative sample of the ASD population on SCD, not

just people who self-select from this list.

I agree with Mark Blaxill that " data is good " , and sometimes we have

to go with the data that's available rather than the data that we

would like to have, but when this is the case we all need to be

fully aware of and forthcoming about the limitations of a self-

selecting sample.

Suzanne

>

> Dear List Members,

> You were recently invited to participate in a survey and we are

asking

> you to HOLD OFF for now.

>

> We are excited by the useful possibilities for data collected and

> processed in a truly scientific manner. To that end, we have

already

> contacted professionals who specialize in scientific surveys to

help us

> create a comprehensive questionnaire that can be used in a number

of

> ways for the benefit of SCD. We are also in the process of

joining

> forces with a recognized autism organization which has offered to

> assist us in creating a powerful research tool.

>

> The main area of investigation will be links to foods. This means

> considerably expanding the parameters of a survey such as the one

> recently proposed. We will be using special software which will

give

> us the ability to tabulate data quickly and efficiently.

>

> The results will enable us to evaluate what is most effective as

well

> as the role yogurt plays in progress on SCD.

>

> We will update you when the survey is ready to be launched. We are

> extremely optimistic about this opportunity to document the

> effectiveness of SCD for Pecanbread members and the autism

community.

>

> Carol F.

> SCD 6 years

>

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Hi Suzanne,

Thank you for your input.;I totally agree with you. Our consultant

told us exactly what you wrote. This is one of the reasons that we are

going to change the survey into an internet survey that can be linked

to other lists. We would load the survey software into our website and

link it to other autism lists. We could then go to a " diet neutral

list " to conduct this poll. We could also find out the success rate on

various lists.

Mimi

> This is good news. Speaking as a statistician, I'm sure your

> statisticians have advised you that your study results are only as

> good as the representativeness of the population that you are

> sampling from and the size of your sample. You want to get a good

> representation of all people who have tried SCD - those for whom it

> has worked as well as those for whom it hasn't. To limit your sample

> to just the members of this list means the survey will probably self-

> select for people for whom the diet has succeeded, which wouldn't be

> realistic or scientifically accurate.

>

> It will be important to include people who tried SCD and abandoned

> it and a representative sample of the ASD population on SCD, not

> just people who self-select from this list.

>

> I agree with Mark Blaxill that " data is good " , and sometimes we have

> to go with the data that's available rather than the data that we

> would like to have, but when this is the case we all need to be

> fully aware of and forthcoming about the limitations of a self-

> selecting sample.

>

> Suzanne

>

>

> >

> > Dear List Members,

> > You were recently invited to participate in a survey and we are

> asking

> > you to HOLD OFF for now.

> >

> > We are excited by the useful possibilities for data collected and

> > processed in a truly scientific manner. To that end, we have

> already

> > contacted professionals who specialize in scientific surveys to

> help us

> > create a comprehensive questionnaire that can be used in a number

> of

> > ways for the benefit of SCD. We are also in the process of

> joining

> > forces with a recognized autism organization which has offered to

> > assist us in creating a powerful research tool.

> >

> > The main area of investigation will be links to foods. This means

> > considerably expanding the parameters of a survey such as the one

> > recently proposed. We will be using special software which will

> give

> > us the ability to tabulate data quickly and efficiently.

> >

> > The results will enable us to evaluate what is most effective as

> well

> > as the role yogurt plays in progress on SCD.

> >

> > We will update you when the survey is ready to be launched. We are

> > extremely optimistic about this opportunity to document the

> > effectiveness of SCD for Pecanbread members and the autism

> community.

> >

> > Carol F.

> > SCD 6 years

> >

>

>

>

>

>

>

>

> For information on the Specific Carbohydrate Diet, please read the book

> _Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

> websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>

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<<To limit your sample

to just the members of this list means the survey will probably self-

select for people for whom the diet has succeeded>>

While I agree that it might not be scientifically accurate to limit a study to

people on this list alone, I would have to say that, in my opinion, a majority

of our active listmembers are actually ones who are either just beginning the

diet.... or who are still very much struggling. Those who find it a rousing

success often leave the list and get busy living regular lives. So, this list

may not be a very representative population if you look at it that way, either.

A study might be very difficult, too, because a fair number of those who have

abandoned the diet may not have been implementing it correctly.... due to

various other influences. Very difficult to accurately gage whether it was a

failure of the diet... or failure of implementation.

Patti

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Mimi,

It sounds like you have an excellent consultant working on this - I

am very happy to hear. No study is perfectly designed, but this

approach would begin to take into account the kinds of factors that

will help you to limit bias. It will be most difficult to assess

how " perfectly " the diet has been implemented in each case, and how

long a parent persisted with the diet before giving up or proceeding

to add non-SCD foods if the diet was working succesfully. But it's a

start! I am happy to hear that you've found someone good to work

with. Please let me know if I can help in any limited way,

Suzanne

> > >

> > > Dear List Members,

> > > You were recently invited to participate in a survey and we are

> > asking

> > > you to HOLD OFF for now.

> > >

> > > We are excited by the useful possibilities for data collected

and

> > > processed in a truly scientific manner. To that end, we have

> > already

> > > contacted professionals who specialize in scientific surveys to

> > help us

> > > create a comprehensive questionnaire that can be used in a

number

> > of

> > > ways for the benefit of SCD. We are also in the process of

> > joining

> > > forces with a recognized autism organization which has offered

to

> > > assist us in creating a powerful research tool.

> > >

> > > The main area of investigation will be links to foods. This

means

> > > considerably expanding the parameters of a survey such as the

one

> > > recently proposed. We will be using special software which will

> > give

> > > us the ability to tabulate data quickly and efficiently.

> > >

> > > The results will enable us to evaluate what is most effective as

> > well

> > > as the role yogurt plays in progress on SCD.

> > >

> > > We will update you when the survey is ready to be launched. We

are

> > > extremely optimistic about this opportunity to document the

> > > effectiveness of SCD for Pecanbread members and the autism

> > community.

> > >

> > > Carol F.

> > > SCD 6 years

> > >

> >

> >

> >

> >

> >

> >

> >

> > For information on the Specific Carbohydrate Diet, please read

the book

> > _Breaking the Vicious Cycle_ by Elaine Gottschall and read the

following

> > websites:

> > http://www.breakingtheviciouscycle.info

> > and

> > http://www.pecanbread.com

> >

> >

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