Family and Caregiver Schizophrenia Discussion Forum

Anyone go thru NIMH studies relating to SZ?

Family
#1

During COVID, I’m sure some things have changed but I was curious as to whether anyone has participated in any of the studies through NIMH? Some are based around the country - some are in-house at NIMH in Maryland. I’ve called them a couple of times to get specifics on certain studies but unfortunately I couldn’t get my son to cooperate. They’ve had numerous studies over the years and often assist with transportation costs from the time one leaves home until their return. This link shows two of the latest studies: https://www.nimh.nih.gov/research/research-conducted-at-nimh/join-a-study/adults/adults-schizophrenia.shtml

This link is to some of the clinical trials they’ve had over the years: https://www.nimh.nih.gov/health/trials/schizophrenia.shtml

'just thought I’d share in case someone might be able to use the info or maybe even participate. I also called them once to find out how the “1% of the population” was arrived at since many times, when I mention my son’s problem, someone knows someone who had it or has a family member who suffered from it. Too, too often. I was told basically that a lot of their info may come from ERs - and those who report cases of it. SO, if not all cases are reported, there is probably a greater number than 1% and in turn, should receive greater funding for research. :palm_tree:

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#2

I went through the application process for a study that my daughter would have been eligible to participate in. It was a 6 month live-in program in Maryland for those with sz and she would have had “free” transportation, room and board, and been paid for the various tests/research she participated in. Everyone I spoke to was very kind, but in the end, my daughter refused to go. Her fear of six months in a “psych ward” outweighed the pay she might have received. It had to be a voluntary participation. Honestly, it sounded like it might have been a good place for her at the time, with sports, art classes, a private room, etc. It’s got to be hard for the NIMH to recruit for a study like that.

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#3

I also talked with them about their six month studies. They told me that if they took someone off their meds to maybe try another, that they would make sure they were again stabilized before returning home. I thought it would have been a great opportunity to go beyond what the local CSUs or even the state run mental hospitals try but my son just wasn’t willing. Sometimes they are just their own worst enemy when not even meaning to be … :palm_tree:

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#4

Yes, that is what that study was for: test and monitor, lower the meds to zero, test and monitor, start a new med, test and monitor, see if the results were different/same/better on the new meds, reduce and go back to old meds, or stay on new meds and go home, or stay off meds if they were deemed unneeded. I think it would have been great for my daughter at the time, as none of the 4 meds tried previously were working well. Perhaps the study would have led to a good med sooner, I don’t know as she just didn’t understand at that point in her life her very real need for meds or even how a research study could help her AND others.

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#5

I was so excited when I saw this post, I sent the link to my son after talking to him about it. As I told him it sure could not hurt and hopefully you wouldn’t come back so zombie like. It seems all his doctor does is give him more medicine. He called and left a message, hopefully they return his call soon while he is on board with it.

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#6

Oh I hope he can take advantage of it! I know this is a bad time for everyone with the social distancing, etc., but if even one person benefits from it, that would be awesome. Because of COVID, they may have a lag time but if he’ll just hang in there, this sounds like a true test of meds that may work best for him. Best of luck!

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#7

Hi @lmarchewka , I think you can do the application for your son, as long as the NIMH staff can verify with him directly after the application is turned in. It is a pretty lengthy written form they want filled out. So if you help your son, he may appreciate it. It makes me smile that he may want to do the study. To me, it seems a great way to find a good med and potentially help others in the future. My daughter could not fill in the forms herself, so I did it for her.

#8

He called but said he has not gotten a call back. He will have to email them, I think with everything going on in the world right now maybe some of them are not working right now. I will definitely keep on him about this.

#9

Well he talked to them and they told him he was not eligible because he takes invega WTH?

#10

I’m sorry @lmarchewka If I were you, I would call there and see if someone can explain to you why invega makes someone ineligible for the study. I’d want to get it clarified myself.

#11

I wonder if it has to do with how long it takes to get out of his system? But, please let us know what you find out …

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#12

I wonder if they are afraid they won’t be able to get people who are on the Invega injection to take meds once the shot wears off? If I recall correctly the first thing they do is take them off all of their meds. My Family to Family teacher’s son did the NIMH study - her son is aware and he enjoyed the entire experience.

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#13

From a scientific perspective that may be part of it, but I’d be more inclined to consider the following: when studying drugs, it’s important to consider the likelihood of drug compliance and ability to follow instructions and report information accurately. Injectable medications are often given to subjects who are less compliant and less experienced with pill forms of medication as far as remembering to take pills and remembering if you’ve already taken a pill. There’s also a question of returning them to their original medication after the study.

I’m sure practical aspects of pill form drug shorter half-lives being easier deal with are important, but it’s very likely medications under study would be in pill form, as new drugs are generally first available as pills, since time released administrative of medications requires complex formulation. From a practical standpoint ceasing medication in the case of adverse side-effects is also easier with pill forms. All this points to subjects with a track record of pill form medication compliance being better choices.

Studies of injectable medications are certainly done, but these are more likely comparative studies to other forms of delivery of the same drug. With these studies you’ve already established the efficacy the drug; you are more interested in effects of dosage over time than anything else.

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#14

Pookey52 that is exactly what they told him, it would take to long to get out of his system. They did tell him they would keep him in mind for anything that comes up. But I do have to say how proud I am of him, he did a fundraiser for mental health for his birthday and has raised 495.00 so far.

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