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Please Take The NODID Survey!

8344 Views 54 Replies 17 Participants Last post by  Claymore
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.

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


- David
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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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, 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.


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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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 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.

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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!

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.


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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
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
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,

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,



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


Our team.


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,

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)
The study has ended.

Thank you for your participation.


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

- David
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