Have you ever participated in a medical study?
January 25, 2005 9:26 AM Subscribe
I'm interested in participating in a US-wide clinical medical research study. Have you ever taken part in one? Did you get any benefit from it? Any harm? Did you ever learn what drug (or placebo) you had taken?
I have a friend who was in the placebo group for free wisdom teeth removal and a little cash, provided you tried out their experimental pain killers.
His painkillers didn't work. CRUNCH.
posted by Peter H at 9:36 AM on January 25, 2005
His painkillers didn't work. CRUNCH.
posted by Peter H at 9:36 AM on January 25, 2005
In general, I don't think medical studies are worth the risk for the cash, personally. I mean your health is the most valuable thing you have. Give plasma instead, maybe?
posted by Peter H at 9:37 AM on January 25, 2005
posted by Peter H at 9:37 AM on January 25, 2005
A friend participated in a study of Xoloft. He probably found it through craigslist. He knew what drug it was from the get go, but it was still double blind. Xoloft apparently can have some nasty effects when you stop taking it quickly, he didn't read up on it, they didn't tell him, and they didn't implement a plan to taper off his dosage.
It turned out fine after he lied to them about how many he had left, and started cutting pills himself, but don't assume they will take care of you. The pay was several hundred dollars, perhaps not on the same scale, but I would still arm myself with a little knowledge.
posted by Jack Karaoke at 9:39 AM on January 25, 2005
It turned out fine after he lied to them about how many he had left, and started cutting pills himself, but don't assume they will take care of you. The pay was several hundred dollars, perhaps not on the same scale, but I would still arm myself with a little knowledge.
posted by Jack Karaoke at 9:39 AM on January 25, 2005
I have participated in a non-drug medical study. I did receive the benefit of medical care and reduced cost treatment. I was also paid for every follow up exam and questionaire that I completed. There were no downsides for me other than it was a 10-year study.
posted by Juicylicious at 9:40 AM on January 25, 2005
posted by Juicylicious at 9:40 AM on January 25, 2005
Have you ever taken part in one?
Not national. In college, I was a subject in the ongoing series of cold studies at UVa. They put virus up yer schnoz and put you up in the local Hilton over a school break to test stuff.
Did you get any benefit from it?
I got paid, and got a lot of studying done.
Any harm?
I was fine; I never even got the cold. A friend of mine had a psychotic reaction to the drugs and has been bipolar ever since (AFAIK), but he was a wee bit nuts to start with.
Did you ever learn what drug (or placebo) you had taken?
They told us in the debriefing. It was a mix of drugs and they were testing interactions; ISTR that both were over-the-counter. I got the placebo.
posted by ROU_Xenophobe at 9:50 AM on January 25, 2005
Not national. In college, I was a subject in the ongoing series of cold studies at UVa. They put virus up yer schnoz and put you up in the local Hilton over a school break to test stuff.
Did you get any benefit from it?
I got paid, and got a lot of studying done.
Any harm?
I was fine; I never even got the cold. A friend of mine had a psychotic reaction to the drugs and has been bipolar ever since (AFAIK), but he was a wee bit nuts to start with.
Did you ever learn what drug (or placebo) you had taken?
They told us in the debriefing. It was a mix of drugs and they were testing interactions; ISTR that both were over-the-counter. I got the placebo.
posted by ROU_Xenophobe at 9:50 AM on January 25, 2005
Response by poster: I'm not in it for anything except the possibility of finding a treatment that works. This Restless Legs Syndrome test is studying the effectiveness of some already-approved drug that is prescribed to treat something else. RLS ingurgitates, let me tell you. Even so, I don't want to fry my brain.
I'm wondering if there are any red flags to watch out for before I sign up. The local contact person was out for lunch when I just called.
posted by Alylex at 9:57 AM on January 25, 2005
I'm wondering if there are any red flags to watch out for before I sign up. The local contact person was out for lunch when I just called.
posted by Alylex at 9:57 AM on January 25, 2005
Best answer: One thing to watch out for - if they put you on Gabapentin (Neurontin), make sure you read up on it, and make sure they slowly reduce the dose when the study is over.
posted by bh at 10:51 AM on January 25, 2005
posted by bh at 10:51 AM on January 25, 2005
Best answer: I read and critique clinical trial consent forms for a living. Be sure you read this book cover-to-cover before you sign up.
Also, it is not uncommon for the contact person for potential volunteers to be out-to-lunch or otherwise away from the phone. They have lives and need to eat, naturally. However, once you are a volunteer and will begin participating in the trial, you should be given a series of phone numbers to call in an emergency. These should include a 24-hour emergency hotline or a physician to contact in case you experience medical problems after business hours, as well as a contact for an IRB or other impartial party who can give you information regarding your rights as a participant.
An IRB is the group or committee that is given the responsibility by an institution to review that institution's research projects involving human subjects. The primary purpose of the IRB review is to assure the protection of the safety, rights and welfare of the human subjects. At some institutions, the IRB is called the "Human Subjects Review Committee."
posted by mds35 at 11:19 AM on January 25, 2005
Also, it is not uncommon for the contact person for potential volunteers to be out-to-lunch or otherwise away from the phone. They have lives and need to eat, naturally. However, once you are a volunteer and will begin participating in the trial, you should be given a series of phone numbers to call in an emergency. These should include a 24-hour emergency hotline or a physician to contact in case you experience medical problems after business hours, as well as a contact for an IRB or other impartial party who can give you information regarding your rights as a participant.
An IRB is the group or committee that is given the responsibility by an institution to review that institution's research projects involving human subjects. The primary purpose of the IRB review is to assure the protection of the safety, rights and welfare of the human subjects. At some institutions, the IRB is called the "Human Subjects Review Committee."
posted by mds35 at 11:19 AM on January 25, 2005
I participated in a study of the time-released version of one of the diabetes pills I was on. In return, I got 2 complete physicals including an ekg. And I also saved a little money not having to pay the co-pay for the scrip while I was in the study.
It was a bit of a pain in the ass, because I needed to travel 45 minutes every week to give a blood sample.
I was on the study for 8 months, I think, and got paid $350.
posted by crunchland at 12:40 PM on January 25, 2005
It was a bit of a pain in the ass, because I needed to travel 45 minutes every week to give a blood sample.
I was on the study for 8 months, I think, and got paid $350.
posted by crunchland at 12:40 PM on January 25, 2005
I was a study volunteer for the USDA Agricultural Research Service Beltsville Human Nutrition Center. Informally the study was called the "Smokers' Tea Study", but I think the official name was something like "The Effects of Black Tea Consumption on Blood Plasma and Lipoprotien Transport in Male Smokers."
I had to eat a controlled diet for a 21 week (7 weeks x 3 study periods). I could only eat the food that was provided for me, nothing else.
Each study period, we would drink a "tea", color-coded either Red, Blue, or Green. The tea was either tea, a placebo, or a placebo with caffeine. We drank 6oz of tea upon waking, 8oz with breakfast, 16oz with lunch, 16oz with dinner, and 6oz before bed. This was a double-blind experiment, so the tea came in color-coded drums from Lipton's.
Before and after each study period, we would have blood tests, a 3 day urine collection, and ultrasounds of our brachial artery taken.
It was a rewarding experience. The food was very good and healthy, I learned a few things about nutrition, and I made $4000 + free groceries for 21 weeks. I liked this study so much, I signed up for the Resting Energy Expenditure experiment. On three occasions, I spent a day inside a calorimeter at Beltsville. I made $225 for those 3 days.
I highly recommend that you take part in any research study that appeals to you. In my case, I got paid, got free food, learned some things, and I was able to use my body for scientific research.
posted by Fat Guy at 12:43 PM on January 25, 2005
I had to eat a controlled diet for a 21 week (7 weeks x 3 study periods). I could only eat the food that was provided for me, nothing else.
Each study period, we would drink a "tea", color-coded either Red, Blue, or Green. The tea was either tea, a placebo, or a placebo with caffeine. We drank 6oz of tea upon waking, 8oz with breakfast, 16oz with lunch, 16oz with dinner, and 6oz before bed. This was a double-blind experiment, so the tea came in color-coded drums from Lipton's.
Before and after each study period, we would have blood tests, a 3 day urine collection, and ultrasounds of our brachial artery taken.
It was a rewarding experience. The food was very good and healthy, I learned a few things about nutrition, and I made $4000 + free groceries for 21 weeks. I liked this study so much, I signed up for the Resting Energy Expenditure experiment. On three occasions, I spent a day inside a calorimeter at Beltsville. I made $225 for those 3 days.
I highly recommend that you take part in any research study that appeals to you. In my case, I got paid, got free food, learned some things, and I was able to use my body for scientific research.
posted by Fat Guy at 12:43 PM on January 25, 2005
As someone who oversees a number of clinical trials for a large biotech company, I would concur with what mds35 said. Make sure you read and throughly understand the informed consent. Take it home, look it over, and feel free to ask lots of questions.
In addition, it's important to understand that there are differences in the physicians participating in clinical trials. While some of these doctors keep a regular practace, others may only do clinical trials. This means that when the study is over, you might need to go somewhere else for additional treatment. You should consider this in your decision making process.
And please...Never lie to the study site! Not only can this have a damaging effect on the trial, it can also cause real problems for you own medical care.
posted by neurodoc at 12:50 PM on January 25, 2005
In addition, it's important to understand that there are differences in the physicians participating in clinical trials. While some of these doctors keep a regular practace, others may only do clinical trials. This means that when the study is over, you might need to go somewhere else for additional treatment. You should consider this in your decision making process.
And please...Never lie to the study site! Not only can this have a damaging effect on the trial, it can also cause real problems for you own medical care.
posted by neurodoc at 12:50 PM on January 25, 2005
I used to go to psychology departments and sign up for every trial I could. I made a fair chunk of change and it was all safe and interesting.
If you want a national study, the National Library of Medicine posts a list of clinical trials. www.clinicaltrials.gov I think if you contacted them they would help you. Another good place to look is student newspapers, or the want ads in your local publications.
posted by gesamtkunstwerk at 4:50 PM on January 25, 2005
If you want a national study, the National Library of Medicine posts a list of clinical trials. www.clinicaltrials.gov I think if you contacted them they would help you. Another good place to look is student newspapers, or the want ads in your local publications.
posted by gesamtkunstwerk at 4:50 PM on January 25, 2005
A better strategy might be to contact specialists in neurology and orthopedics. Tell them what you are interested in and they might recommend a good specialist or a promissing clinical trial.
posted by gesamtkunstwerk at 4:53 PM on January 25, 2005
posted by gesamtkunstwerk at 4:53 PM on January 25, 2005
Yes, read -- and make sure you understand -- the informed consent. Ask questions if you don't understand everything.
I've taken part in one study, which tested whether a particular MAO inhibitor would work in a skinpatch form without a diet restriction. It was fine -- worst things that happened were a little irritation where I placed the skin patch, and a brief not-great-but-not-dangerous "serotonin surge." I got a complete physical and regular medication monitoring out of it, and a huge supply of free samples + a scrip for a different, more traditional antidepressant once the study was over.
posted by Vidiot at 5:54 PM on January 25, 2005
I've taken part in one study, which tested whether a particular MAO inhibitor would work in a skinpatch form without a diet restriction. It was fine -- worst things that happened were a little irritation where I placed the skin patch, and a brief not-great-but-not-dangerous "serotonin surge." I got a complete physical and regular medication monitoring out of it, and a huge supply of free samples + a scrip for a different, more traditional antidepressant once the study was over.
posted by Vidiot at 5:54 PM on January 25, 2005
Best answer: Mind you get your erythrocyte lead levels checked before you get started. Lead poisoning is a commonly overlooked cause of RLS.
As for clinical trials, I design and conduct them, so I don't know what my advice is worth, except to say that the consent of my patients is quite valuable to me and to society at large; and to say that in return for this I concern myself with their wellbeing to the fullest extent that I am able.
If for some reason you don't feel that the study team you're dealing with has a similar attitude, that'd be the time to have second thoughts.
Oh, yeah - READ and UNDERSTAND the informed consent. The process is predicated on the assumption that you WILL DO THIS. I occasionally think to myself, 'that person didn't really read that before he signed it', and I'll try to encourage them to read it; but since it takes me nearly an hour to recruit a patient, and since my time is extremely limited and used for a full measure of other things, I often wind up letting it slide. In a perfect world I wouldn't let such a patient into my study.
posted by ikkyu2 at 11:31 PM on January 25, 2005
As for clinical trials, I design and conduct them, so I don't know what my advice is worth, except to say that the consent of my patients is quite valuable to me and to society at large; and to say that in return for this I concern myself with their wellbeing to the fullest extent that I am able.
If for some reason you don't feel that the study team you're dealing with has a similar attitude, that'd be the time to have second thoughts.
Oh, yeah - READ and UNDERSTAND the informed consent. The process is predicated on the assumption that you WILL DO THIS. I occasionally think to myself, 'that person didn't really read that before he signed it', and I'll try to encourage them to read it; but since it takes me nearly an hour to recruit a patient, and since my time is extremely limited and used for a full measure of other things, I often wind up letting it slide. In a perfect world I wouldn't let such a patient into my study.
posted by ikkyu2 at 11:31 PM on January 25, 2005
Response by poster: Wow, thank you all. The trial is being done by a sleep specialist clinic (8 doctors) that has been around for a while. I don't know much about them. Their website reads like a high-pressure sales pitch.
bh, thank you for jogging gabapentin back into my mind. I think that probably is what this trial is all about. I have read a bit about it and tend to back away from such things.
Otoh, my uncle is epileptic. It's not outside the realm of possibility that restless legs are somehow related to epilepsy. My grandmother has RLS, and so did her father, so there is a question of heritability.
I will get the book, and thanks mds35. Should be an interesting read. I'm not certain I'll get as far as calling them again. If I do follow through, I will certainly ask every question I can think of, and study the informed consent.
ikkyu2, I am especially grateful for your reply. I will call my doctor in the morning to schedule a test for lead. Let's hope the docs at the sleep clinic are as caring as you.
AskMe rocks.
posted by Alylex at 6:04 PM on January 26, 2005
bh, thank you for jogging gabapentin back into my mind. I think that probably is what this trial is all about. I have read a bit about it and tend to back away from such things.
Otoh, my uncle is epileptic. It's not outside the realm of possibility that restless legs are somehow related to epilepsy. My grandmother has RLS, and so did her father, so there is a question of heritability.
I will get the book, and thanks mds35. Should be an interesting read. I'm not certain I'll get as far as calling them again. If I do follow through, I will certainly ask every question I can think of, and study the informed consent.
ikkyu2, I am especially grateful for your reply. I will call my doctor in the morning to schedule a test for lead. Let's hope the docs at the sleep clinic are as caring as you.
AskMe rocks.
posted by Alylex at 6:04 PM on January 26, 2005
This thread is closed to new comments.
posted by zardoz at 9:30 AM on January 25, 2005