Family and Caregiver Schizophrenia Discussion Forum

Support Research - New Imaging Study in New York - At Langone Medical Center


#1

Details:


#2

If you have questions - I think the woman who contacted us will answer questions about the study.


#3

I would see if my son would be interested if it didn’t have to be in New York.


#4

I’m pretty sure its only in New york


#5

It doesn’t sound like the participants get anything out of it except money.

Seems like they could at least give a diagnosis if they come up with one?

My family member in that age group had white matter changes after first episode of psychosis documented by MRI before and after episode.

What is the hypothesis of the study? That the white matter changes are related to greater cognitive dysfunction?

Since the study isn’t meant to be therapeutic for participants, how is this study meant to help people with these illnesses in the long run?

They do realize, I hope, that no one with severe, untreated psychosis will volunteer so the sample will be skewed to higher functioning volunteers or those who have somehow received treatment. Less than half of all people with serious mental illness receive treatment.


#6

Hello! Thank you for the responses. I am the research assistant recruiting for this study. Just wanted to say that it does have to be in New York, unfortunately.

As for what Hereandhere said, I totally agree that this study, and most studies like it, are skewed toward people who are higher-functioning and it is a problem, as this leaves out a huge segment of the population, so no argument there.

The study is non-therapeutic and there is no direct benefit to the patients apart from the money. The hope would be that this adds to the body of knowledge about SCZ, which could help with new treatments, but I understand people’s skepticism about participating in a study with no direct benefit to the participants. However, we do appreciate the contribution to science :slight_smile:

And yes, the primary goal of the study is to see whether white matter deficits are related to greater cognitive dysfunction. Let me know if I can answer any more questions!

Christine


#7

I like to think that everyone benefits as the research community learns more about this disorder - knowledge is a good thing, and ultimately I think it will help people who suffer from it, though immediate benefits beyond the monetary aspect are not there.


#8

It’s just that people with the illness who are having a really rough time will not be in the study, therefore, as usual, the results and how they contribute will only be for higher functioning people with these illnesses…

There is no help for people who are severely ill.

I hope in the long run that studies like these and others can be useful in developing some biological markers (???is that term correct???) for schizophrenia, so people who are severely ill can be diagnosed, treated, and cared for in the community.


#9

Hi! Yes you are correct, the correct term is biological markers, or bio-markers for short, and yes that is the hope, that this study and others like it would contribute to finding these bio-markers.

And again, I totally agree that people who are severely ill do not participate in research studies so the results are highly skewed. However, perhaps if researchers were to find a treatment/bio-marker for SCZ in someone whose illness is less severe, this information could still be applied to those who are unable to participate in research (just a thought).


#10

I participated in the imaging studies at the NIMH. I got a lot out of talking to the researchers and hearing how my results were the same and how my results differed from the other participants. I didn’t participate for the money.


#11

How do you find studies to participate in?


#12

Just check here every few months:

https://clinicaltrials.gov/ct2/results?term=schizophrenia&Search=Search


#13

I hope someone does a study on how to quickly and adequately deliver effective treatment and social supports to the fifty percent of people suffering from severe and persistent who do not receive any treatment in a given year.