# Please Take The NODID Survey!



## Dreamer (Aug 9, 2004)

NODID said:


> 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


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## g-funk (Aug 20, 2004)

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


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## Dreamer (Aug 9, 2004)

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


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## David Kozin (Jan 11, 2005)

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


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## David Kozin (Jan 11, 2005)

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

Thanks!

- David


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## Crumbles (Aug 19, 2004)

NODID said:


> 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 ....


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## Allure (Jul 26, 2005)

did it


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## David Kozin (Jan 11, 2005)

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


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## Universal (May 30, 2005)

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


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## David Kozin (Jan 11, 2005)

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.


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## Crumbles (Aug 19, 2004)

NODID said:


> 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.
> ...


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


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## Crumbles (Aug 19, 2004)

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.


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## David Kozin (Jan 11, 2005)

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


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## Crumbles (Aug 19, 2004)

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!


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## Scattered (Mar 8, 2005)

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.


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## Crumbles (Aug 19, 2004)

Dreamer said:


> 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.
> ...


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.


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## Da'Burgh (Apr 25, 2005)

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


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## David Kozin (Jan 11, 2005)

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


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## Scattered (Mar 8, 2005)

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?


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## David Kozin (Jan 11, 2005)

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 sit*e," 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


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## Revelation_old (Aug 9, 2004)

I usually take the requests but I would like to make one. 
Please take this survey again. This is not some simple internet survey. THIS is part of DP/DR HISTORY. Let's try and get rid of it.


*http://nodidresearch.org/dpdrstudy/*










Take a look at that. The real deal is here people. Let's do this.


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## Guest (Sep 23, 2005)

I cant take the survey, I tried a couple of times, even backwards lol...then in the middle of doing it my comp freezes. Will try again sometime later, but I fear the worst :roll:


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## Crumbles (Aug 19, 2004)

just retook the test. Is retook even a word??? lol, ah hell... I'm too damn tired to care... sleepy time!


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## MyTwinTorpor (Sep 10, 2005)

Took the survey. I encourage more people to take it. It seems pretty good. Later.


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## Luka (Aug 30, 2005)

I just finished the survey!


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## Guest (Sep 27, 2005)

I took it. Afterward, I noticed that it said "drug induced disorders" but I've had memory of this disorder since I was 6 years old, and I have never used any drugs recreationally. Nor have I used recreational drugs. Sooo... What then induced my DP?


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## Luka (Aug 30, 2005)

My DP/DR is also not drug induced, but took the survey anyhow.


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## Dreamer (Aug 9, 2004)

Non drug-induced DPers are needed as controls for this study. Everyone should participate regardless.

I'm also non drug-induced and took the survey.

D


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## David Kozin (Jan 11, 2005)

Non-drug induced DP individuals are not simply a control, but are contrast. This is important as the contrast goes both ways. We learn about both groups, the same analysis/comparisons. You will get the data from both groups.

It is a good idea for everyone to take part, so when the data is public you can see the relationships in all groups.

All my best!

David


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## David Kozin (Jan 11, 2005)

Current Count 79 participants.

Please, if you can PM your friends on the board or contact others with DP/DR symptoms you should send them to the study link. PLEASE DO NOT TAKE THE SURVEY TWICE! This will only do a disservice to our data. However, please encourage as many individuals that you can to take this study. Our first goal is 200, but 500 would be a very strong number and I believe we can reach that goal.

Dr. Simeon is pleased with the response rate so far, actually her last e-mail regarding the response rate simply read: "Fantastic!"

However, please take the time to take the test. I can not give any preliminary results, however interesting data already is beginning to form. However, in order to make data significant, you have to show statistically that the data you have is not just caused by random chance, but instead by a "statistically significant" chance that it was caused from a real pattern/relationship/etc. For example, if we have 10 people toss a coin and 7 of them get the Front side, there are mathematical calculations to determine how likely it is that this result could happen at random. With only 10 toin tosses, having 7 be heads (which is 70%) would NOT be statistically significant. However, if we had 10,000 people toss coins, and 6,000 of them had them land on the Front side, we would have 60% of coin tosses being Front and 40% being Back. BECAUSE the data set is so large (10,000 tosses), this is now EXTREMELY significant. One would expect a 50/50 ratio, however with so many tosses the "odds" of having 60% of them being the Front side is considered VERY significant.

Essentially, a value is assigned called a "p" value, which is generally expressed in the terms: p = x, where x is the chance that this result would happen at random. So, if you calculate your data and receive a p = .95, then there would be a 95% chance that the hypothesis you were testing could have happened randomly. However, if your p = .002 then there would only be a .2% chance that this result could have happened at random. The P value is strongly affected by the NUMBER of DATA points that you have. Tossing a coin twice and having it turn up on the same side in a row is not signiciant, but toss the coin 100 times and have it turn up on the same side -- now you have some significant.

I do not want to go in to more detail about the statistical analysis of data, but just want to say that the more data the easier it is for us to draw conclusions that we can express as being signicant and not random. In this case, if 90% of 3 individuals said that Gabapentin improved their symptoms we could not publish this data and say that it is significant. However, if we haad 500 participants and 400 said that Gabapentin improved their symptoms, then we could use this to form an argument that we should study Gabapentin (generic for Neurontin) as an treatment for DP/DR. We use this data to get funding for a study on the treatment of DP/Dr with Gabapentin (and also similarly related anti-convulsant drugs).

Because this is an internet survey, we are going to be scruitinzed even more for our data because we do not have a way to validate if you are lying or not. However, the expected "noise" created by individials just taking the test and selecting random answers is reduced by the amount of individuals taking the test. Also, it helps when you write a detailed story on the last question, as this demonstrates to us that your data is real and that the information contained in our database is a real person who is affected by DP/DR.

My apologies for rambling and poor grammar, however I must get to work before I am late.

Best,

David


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## David Kozin (Jan 11, 2005)

84 Participants.

Great work, let us try to get 100 before one day passes. For those of you who have have been waiting to take it, here is your chance to help push us past the first major milestone!

- David


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## David Kozin (Jan 11, 2005)

99 Participants so far, we are very pleased. Consider taking the time to take this survey and help us break into the 100+ mark!

Much thanks to everyone who has participated so far! Your results will be invaluable, and we very much look forward to presenting all of our findings and anticipate great data!

- David


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## Crumbles (Aug 19, 2004)

Just curious if we could have an update on how many people took the survey? I hope you met your goal!


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## university girl (Aug 11, 2004)

I echo David... Thanks guys for taking the survey. I am sure we are all eagerly awaiting the results.


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## *Alex (Sep 27, 2004)

I just did it. Are we at 100 yet?


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## Revelation_old (Aug 9, 2004)

*Alex said:


> I just did it. Are we at 100 yet?


Well over. Last number I was given was 110 on October 9th.


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## *Alex (Sep 27, 2004)

Cool, thanks rev..... lets try for 200 now. Shouldnt be too hard with 1349 members. If you havnt done it yet, it takes like 30 min, less if not drug induced. Have a crack at it, might help us someday.


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## David Kozin (Jan 11, 2005)

*We have 142 participants*. We are unable to give details on the survey results so far, but we wanted to let you know that we will have statiticians at Mount Sinai School of Medicine and Dr. Simeon directing the majority of the data analysis. We would like 300 total participants by mid-december, which would be the end of the school semester, which will allow for dedicated time for data analysis.

All my best,

David


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## David Kozin (Jan 11, 2005)

153 Participants.

We are moving along nicely towards our goal. I know that I am looking forward to explaining the results and methods of our study when we are complete. Afterwards,

All my best,

David


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## David Kozin (Jan 11, 2005)

198 PARTICIPANTS

We are two thirds towards our goal. This is very exciting!

Best,

Our team.


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## David Kozin (Jan 11, 2005)

223 PARTICIPANTS


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## David Kozin (Jan 11, 2005)

FINAL CALL FOR PARTICIPANTS

Based on the rate of responses, we will probably see the study end in 1 and a half weeks. This is a last call for individuals to participate in the study. We would like to end the study soon, which will give me the ability to discuss the study, and so we can begin data analysis.

If you have been waiting to take the study, the time is definitely now to put in your mark as a participant. We will be ending the survey at our target number.

When the study is complete, there will be a debriefing on the questions. I will see if I can set-up a Chat Room discussion on the study when appropriate.

All my thanks,

David


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## Da'Burgh (Apr 25, 2005)

I cannot wait to see the results!


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## Malory (Nov 27, 2005)

I would have been into doing that survey but it says 'drug induced', which my DR is not.


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## Dreamer (Aug 9, 2004)

Malory said:


> I would have been into doing that survey but it says 'drug induced', which my DR is not.


Malory it is for ANY DP/DR, drug induced or otherwise. I took the test and I have non drug-induced DP/DR.

Please do take the survey, your input is important!

D


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## Malory (Nov 27, 2005)

Thanks, I completed the survey and even found it a little helpful.


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## David Kozin (Jan 11, 2005)

283 participants.

I will love to present the results when ready. At least I will be able to discuss the questions and the design used in more detail when we are complete.

- David (my apologies, this is the first time I have been near the Internet (I was on vacation) and I will be getting to e-mails)


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## RichyF (Jun 7, 2005)

i would quite happily take the survey but i live in the uk


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## RichyF (Jun 7, 2005)

just taken the survey. didnt realise it was an online survey.


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## David Kozin (Jan 11, 2005)

The study has ended.

Thank you for your participation.

Best,

David


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## freesong (Dec 26, 2005)

I took it and found it helpful to show that many of my symptoms were asked about since I am new. I want to help in any way I can and hope that there will be adequate funding for researching and eventually finding the cause and a cure for this condition soon. Keep up the good work. God bless, freesong


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## David Kozin (Jan 11, 2005)

A piece of history... the NODID/MSSM in the beginning. In 2005.

- David


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## Claymore (Jun 13, 2009)

How do you take the survey and where? ill take it.


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## Guest (Jun 22, 2009)

Claymore said:


> How do you take the survey and where? ill take it.


Claymore, the survey was in 2005 and was the basis for the publication in the Journal of Clinical Psychiatry. Forgot where that thread is. Long completed. But there are always new things going on. Look in the links section at the organizations such as Mt. Sinai, the IoP, etc. McLean where David/NODID is helping with research now, etc.

viewtopic.php?f=1&t=19732

Link to recent publication results. That's how long research takes. DP Board members took the test, again back in 2005 before you were here. My guess there will be other surveys in the future.


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## Claymore (Jun 13, 2009)

Dreamer* said:


> Claymore said:
> 
> 
> > How do you take the survey and where? ill take it.
> ...


Thanks Dreamer*.


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