[Dreamer]

50 Case Numbers Distributed
11 participants completed the test.
Our goal is 200.

Dear Folks,
I am stunned by this. Any bit of research that goes into DP leads us one step further to understanding how to treat this.

Many complain that there is no research going on when Mt. Sinai is on the cutting edge of DP research and has been for years.

I beg of you. The test is 100% anonymous. It takes 40 minutes max to fill out. It is distracting!

Please take the test... if not for this ol' Dreamer geezer, than for all the young folks who haven't yet found this board, for anyone who suffers from this.

No one put me up to this. Seriously. This is so important.

Please!
Dreamer

 

[g-funk]

Just tried but and case number was approved but then it said 'parse error'

 

[Dreamer]

Damn, I hope others aren't having this problem. I'll post it in the NODID section.

 

[David Kozin]

This survey has a few goals to support you:

1. To produce useful data that can be helpful. Such as "which medications were most helpful", "which symptoms are most frequent", etc.

2. To have MASSIVE numbers of participants (please no repeats, that will not help the data), which as Dr. Daphne Simeon put in an e-mail to me yesterday when discussing the possibility of a very large set of participants: this will "help with drawing attention and funding to this area." This survey is sponsored by the institution and the researcher that are bringing the most new research regarding DP/DR. This is a step for getting more funding in this area. If we can show the committees, which choose where research dollars are spent, that hundreds of people are suffering and willing to take a study like this, this is how we show these groups that you are worth their money.

If we do have a large group of individuals, we have designed the study in such a way that we can use this to help demonstrate that we have a DP/DR population that requires more research dollars to be spent on us. If you ever asked, "Why is there no research being done to help this problem," this is it, this is how you can change that. This is how you can help yourself.

Also note: I have seen some concerns regarding test questions seemingly not making sense in some instances -- rest assured that all questions are designed as intended. As we say in the survey, choose the most best answer.

We have 21 completed so far.

- David

 

[David Kozin]

I fixed that error. The problem last only about 20 minutes. A misplaced quotation mark.

Thanks!

- David

 

[Crumbles]

Also note: I have seen some concerns regarding test questions seemingly not making sense in some instances -- rest assured that all questions are designed as intended. As we say in the survey, choose the most best answer.

I took the survey just because I will do anything I can do to help, however, I disagree with you on your "questions are designed as intended" part. For the last 20 questions or so, if you select "NEVER" as the frequency, you STILL have to select an option under DURATION. How does this make sense?

Question:
Does X or Y ever happen?
NEVER
Never? OK, how long did it NEVER happen for?
Umm... it never happened.
Yea, but for how long.
Umm.... never?
So a few seconds?
No, never.
OK, a few seconds.
Ok ....

 

[Allure]

did it

 

[David Kozin]

It does not make logical sense, but your choice in that case is still important. The answer IS important, if not logical. Trust us. There are methods and reasons for this, if not maddening.

For example, let us say a question was:

1a. Do you have walk to the store? Yes or No

1b. How often do you walk to the store, please select the best answer? You must choose either "Once a day" or "Once a week"

Now let us say that you select No for 1a, but you are forced to answer 1b with one of the two answers given even if you select No. So, you select "once a day". This would suggest something to the researchers versus selecting "once a week". Just choose the best answer.

I know it may be frustrating and not seeminly logical, but important.

- David

 

[Universal]

please provide a link to the study... i'm thinking about seeing Dr. Simeon for my dp.dr, they might just give me a bunch of medications but it's worth it in my humble opinion. probably seeing someone who has experience in the field of dp is a big step already. so please provide a link to the study.

cheers,

UNI

 

[David Kozin]

Just a quick aside on this conversation, THIS does not apply to this study, but gives you an idea of why research studies are sometimes unusual and it important to follow instructions as given on the study, even if sometimes weird or unusual.

Let us say you are participating in a study and you are told that you are supposed to take a 50 page survey on your sleeping habits. You are placed in room attached to a hallway with a drinking fountain. You are given 1 glass full of water.
For every person given 1 glass of water, a second person is given an plastic cup full of the same amount of water.
You complete this long study. At the end, you find out that they were not checking to see what you answered on the test, but checking how many times you visited the drinking fountain. They were actuallly comparing the groups with the glass of water versus the plastic cup of water to see if there is a difference between the two. Also, each group could have been given a survey about sleep, but the second one talked A LOT about dreams about water, the ocean, and referenced liquidds a lot. So, they were testing how this affects your rate of going to the drinking fountain. They may also have been checking to see if you eventually smash the glass or plastic cup against the wall in frustration for taking a 50 page test...

Trust the study, just follow the directions.

 

[Crumbles]

Just a quick aside on this conversation, THIS does not apply to this study, but gives you an idea of why research studies are sometimes unusual and it important to follow instructions as given on the study, even if sometimes weird or unusual.

Let us say you are participating in a study and you are told that you are supposed to take a 50 page survey on your sleeping habits. You are placed in room attached to a hallway with a drinking fountain. You are given 1 glass full of water.
For every person given 1 glass of water, a second person is given an plastic cup full of the same amount of water.
You complete this long study. At the end, you find out that they were not checking to see what you answered on the test, but checking how many times you visited the drinking fountain. They were actuallly comparing the groups with the glass of water versus the plastic cup of water to see if there is a difference between the two. Also, each group could have been given a survey about sleep, but the second one talked A LOT about dreams about water, the ocean, and referenced liquidds a lot. So, they were testing how this affects your rate of going to the drinking fountain. They may also have been checking to see if you eventually smash the glass or plastic cup against the wall in frustration for taking a 50 page test...

Trust the study, just follow the directions.

Damn you! Now you got me curious! I want to go back and look at the questions again now! :lol:

 

[Crumbles]

So basically what you're saying is that based upon me choosing the lowest possible timeline in a forced answer, this says something to you about how I think or my personality?

That's pretty interesting I guess, however, I still don't see how it would be relivant in this situation.

But again, I'm nothing close to a doctor, nor have I ever studied psychological testing, nor did I spell "relevant" correctly above.

*edit*
if this is true (what I said) you may want to delete these posts in fear that it may skew your results.

 

[David Kozin]

Crumbles, of interesting note, we are actually going to modify the study.

We have locked the survey temporarily (about 5-8 hours) while we look at data and adjust the survey.

My apologies for the delay. We are no longer going to force a response on duration if the frequency is never. Reasons will not be provided.

I will advise when it is back up.

Best,

David

 

[Crumbles]

Well, it's nice to know that even in the crippled state my mind is, it would appear to still be working slightly if the survey is changing over my observations!

 

[Scattered]

I just took the survey after getting my case number. It really is a very simple and quick test. As they said 40 minutes at most it didn't take me long at all and seemed to be very relevant. There must be over a 1000 registered users on this board alone, we should be able to have 200 easily.

 

[Crumbles]

Dear Folks,
I am stunned by this. Any bit of research that goes into DP leads us one step further to understanding how to treat this.

Many complain that there is no research going on when Mt. Sinai is on the cutting edge of DP research and has been for years.

I beg of you. The test is 100% anonymous. It takes 40 minutes max to fill out. It is distracting!

Please take the test... if not for this ol' Dreamer geezer, than for all the young folks who haven't yet found this board, for anyone who suffers from this.

No one put me up to this. Seriously. This is so important.

Please!
Dreamer

Here is the link to the study she is referring to, even though it was posted in the other thread it can't hurt to have it posted here as well:

PLEASE VISIT http://nodidresearch.org/dpdrstudy/ TO TAKE THE STUDY.

 

[Da'Burgh]

I would have finished it if it didn't freeze my computer first. Now I don't even know if I can finish again.

 

[David Kozin]

The test should be locked at this time. We apologize for the delay, however we have reconsidered the impact of two separate portions of the design, and have chosen to adjust two sets of rules regarding specific questions -- in their current state the questions may be more confusing then useful and turning people away from completing the test.

We expected glitches during the initial pilot days. When you are unable to do face to face research, where we could have simply adjusted the words and rules in person, we have to take actions such as locking the test temporarily and quickly re-writing the code. We expect this to be completed by the end of the day.

With 26 participants having completed the test so far, we believe this is a strong pilot group with very useful information. We are reviewing their data and the suggestions they brought to our attention. In addition, the information questioned on this web site.

You will be advised when the test is unlocked.

Thank you everyone for your support and patience, this could not be done without your support.

David and Dr. Simeon

 

[Scattered]

Is the data collected from pilot testors going to be used in the final results of the study? Or is there some conflict there because the test itself is going through changes?

 

[David Kozin]

The data is useful and will be used, however because the data has been marked now as pilot data without the ability to score it exactly with the new data, those individuals who have taken the test are encouraged to take the test again -- this will allow their scores to influence the results of the standardized data mass and not just the pilot data pool.

This was an extremely difficult choice to make, however we decided that the first round of individuals who took the test and provided this initial and very valuable data are the type of individuals who would be willing to take the test again. There is no need for those individuals to write their stories in the last question text section again, they can simply mention they already took the test, or even better refer to their previous case number, and we will be able to determine (based on the other questions) how to match your responses up.

Honestly, piloting the test with real subjects on the system is an integral part of the research process (admittedly we wish we were perfect), and within one day we have found the areas of the study that could cause the most problems, ruin data for the future, or prevent individuals from taking the test.

I have altered the opening text of the study intro to read, "...and the valuable input and testing from members of the dpselfhelp.com web site," because it was this group of early test takers that allowed us to analyze the initial data, read the excellent suggestions, and point out the problems of the system.

We are in debt to the members who have taken the test already, and hope that they will take the survey again. It will be up for a long time, and our intention is to end the survey and publish the data, however we will have the survey continue to exist to gather data as long as we can.

The site is now back up and running. The changes made now allow you to take the test immediately and we have followed the wise advise of members of this and the other board from comments made in the survey or on the web site.

The study is up again. Our humble apologies. By the way, for the curious Crumbles, no... this down time is NOT part of the test to see how a message board reacts to a survey going down. However, you get your shot at taking the test again.

David