Does anyone have experience with clinical trials?

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I am trying to connect with anyone who has any experience with a drug study or some type of clinical trial for new medications. Want to know how it went for you and why you decided to be a part of a study. What were the protocols and procedures, that sort of stuff.

We are waiting for the start of alabama's cbd study out of UAB. We meet all there qualifications and hopefully we get in. I know it's a long shot but if anyone knows anybody in the UCSF study on the effects of Epidiolex please let us know how to contact them. We would love to here about their experiences.

Any help would be greatly apperecated.

Comments

I have been in several

Submitted by just_joe on Tue, 2015-03-10 - 11:04

I have been in several studies. I did them because I wanted better medications then the ones I took when I was younger. The protocals are different with the makers. You will have to read pages of all kinds of things and sign off on them. They let you know about possiable side effects. With most studies they start with a person taking either a placibo or the real drug. You have a diary to note thigs that are different on nany day. That is also where they come up with different side effects that a person may have. After a 3-6 month study you can move to the next stage. In that stage you are generally taking the real drug. You have another diary and note things in it too, You are required to go to the study office at times weekly to start with and then bi weekly them bi monthly and then monthly. In most you are given funds for traveling expenses. I know this because my neurologist works with people that do the studies. Each state has offices or doctors that do studies. I have been using generic keppra and was having more seizures then I normally was having. I set up an appointment with Doc because I thought it might have been the generic. I checked with the pharmacy and got the names of all the generics I had used. When I presented the information he excuesed himself for a couple of minutes. When he came back in he said I did a good job but it was not the generic. He saw my puzzled look and then he stated that it takes about a month for all aed meds to get completely out of a person system. The increase in seizure count started about 6 weeks after I had been released from th study. The reason I had the increase was because I had not been on the placebo I had been on the drug being studied. So yes I do know what happens in some studies. In some you generally have to be having a certain number of seizures and if the medication is for a certain type of seizure then you have to be having those seizures. I do not know everythign about the studies but I do know about the ones I was in. I do know that other studies have other things going on but since I wasn't in them I can't give information on them. I hope this helps Oh I will try and come up with a site you can go to to see is neds are being tested in your area Joe

I have been in several studies. I did them because I wanted better medications then the ones I took when I was younger. The protocals are different with the makers. You will have to read pages of all kinds of things and sign off on them. They let you know about possiable side effects. With most studies they start with a person taking either a placibo or the real drug. You have a diary to note thigs that are different on nany day. That is also where they come up with different side effects that a person may have. After a 3-6 month study you can move to the next stage. In that stage you are generally taking the real drug. You have another diary and note things in it too, You are required to go to the study office at times weekly to start with and then bi weekly them bi monthly and then monthly. In most you are given funds for traveling expenses. I know this because my neurologist works with people that do the studies. Each state has offices or doctors that do studies.  I have been using generic keppra and was having more seizures then I normally was having. I set up an appointment with Doc because I thought it might have been the generic. I checked with the pharmacy and got the names of all the generics I had used. When I presented the information he excuesed himself for a couple of minutes. When he came back in he said I did a good job but it was not the generic. He saw my puzzled look and then he stated that it takes about a month for all aed meds to get completely out of a person system. The increase in seizure count started about 6 weeks after I had been released from th study. The reason I had the increase was because I had not been on the placebo I had been on the drug being studied. So yes I do know what happens in some studies. In some you generally have to be having a certain number of seizures and if the medication is for a certain type of seizure then you have to be having those seizures.  I do not know everythign about the studies but I do know about the ones I was in. I do know that other studies have other things going on but since I wasn't in them I can't give information on them. I hope this helps Oh I will try and come up with a site you can go to to see is neds are being tested in your area Joe

I have been in several studies. I did them because I wanted better medications then the ones I took when I was younger. The protocals are different with the makers. You will have to read pages of all kinds of things and sign off on them. They let you know about possiable side effects. With most studies they start with a person taking either a placibo or the real drug. You have a diary to note thigs that are different on nany day. That is also where they come up with different side effects that a person may have. After a 3-6 month study you can move to the next stage. In that stage you are generally taking the real drug. You have another diary and note things in it too, You are required to go to the study office at times weekly to start with and then bi weekly them bi monthly and then monthly. In most you are given funds for traveling expenses. I know this because my neurologist works with people that do the studies. Each state has offices or doctors that do studies. I have been using generic keppra and was having more seizures then I normally was having. I set up an appointment with Doc because I thought it might have been the generic. I checked with the pharmacy and got the names of all the generics I had used. When I presented the information he excuesed himself for a couple of minutes. When he came back in he said I did a good job but it was not the generic. He saw my puzzled look and then he stated that it takes about a month for all aed meds to get completely out of a person system. The increase in seizure count started about 6 weeks after I had been released from th study. The reason I had the increase was because I had not been on the placebo I had been on the drug being studied. So yes I do know what happens in some studies. In some you generally have to be having a certain number of seizures and if the medication is for a certain type of seizure then you have to be having those seizures. I do not know everythign about the studies but I do know about the ones I was in. I do know that other studies have other things going on but since I wasn't in them I can't give information on them. I hope this helps Oh I will try and come up with a site you can go to to see is neds are being tested in your area Joe

The site to go to to find out

Submitted by just_joe on Tue, 2015-03-10 - 11:10

The site to go to to find out the trials is "clinicaltrial,gov"""All you have to do is type in "epilepsy,and then your state or country"