Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 <<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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 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 > > > > Quote Link to comment Share on other sites More sharing options...
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