Schizophrenia.com

Participating in Research - My Experience

#1

If you look under “Join Research and Studies” on the home page of the website, there is a study listed called Six Month Inpatient Study.

I am currently participating in that study.

I am living at the Clinical Research Center at the National Institute of Health in Bethesda, Maryland. I have been for about 1.5 months now.

I really like it here. We’ve made some changes to my medication. I’m no longer on Trazadone to help my insomnia. I am switching from Thorazine to Seroquel. I will soon be tapered off of Lexapro.

In a month or two, I will spend 4 weeks off all medications for the purpose of the study. The doctors are hoping that in addition to participating in research, they will get a clearer picture of my symptoms and hopefully that will lead to a more informed diagnosis.

If you have any questions about what it is like to live in a research hospital or anything, please ask. I don’t know what you guys want to know about so I don’t know what to tell you about.

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#2

Thanks so much for posting about study participation. Please let us know how it goes! How are you liking it so far? Are you liking the doctors? How have you been feeling?

#3

I do really like it. The doctors are nice and very detail oriented. One thing I like is that patients in the schizophrenia studies are really encouraged to be active and exercise since the medications usually cause weight gain. We take walks almost every day and I just came back from a unit wide basketball game.

We attend several groups throughout the week ranging from fitness, social skills, self-management, leisure education, and more. Even though we are here for research, there is a large focus on providing us with therapy.

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#4

Thanks for sharing your experience. It sounds like a nice project. I couldn’t do a six month project as I am in school, but it sounds like a nice, safe environment in which to experiment with getting off drugs. That is something that I aspire to do.

#5

I applaud your courage to take part in a study like this. And especially to go off meds for that long. I hope you have the most positive experience possible with it!

Blessings,

Anthony

#6

Wow, it sounds like a very well rounded program with a little bit of everything. Good luck.

Please keep us posted on this, it sounds really interesting.

#7

I have participated in research at that hospital. Specifically, one day of my two day participation in the Sibling Study took place there in 1997.

When I was there, no one could smoke on the hospital grounds anywhere and no one could smoke in like 100 feel of the property. although it didn’t seem like that was enforced by looking at the butts along the perimeter.

I had some issues with stuff they promised me in the research study that never materialized. They were very nice to me when I had something they wanted, but I seemed discarded as soon as they no longer needed me. Lucky for me, they contacted me about two years after the study and wanted more samples of blood from me and my family members, and so that time they did address the requests I had been sending along for two years.

More recently, they offered me a six month research program in which I might have participated, but they wouldn’t let me bring in a lap top because they wanted me to interact rather than isolate.

While I was there, I got to look into the face of E. Fuller Torrey, which was kind of kewl! Also, one of my sessions with a mucky muck was interrupted by a young MD who had sliced his finger while dissecting a brain and wanted very much to find all about the person who had donated said brain. That was kewl, too!

Jayster

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