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        New Message Board Archives >> 2004 Posts >> Clinical Trials at Jefferson
        
(Message started by: Lizzie2 on Sep 16^th, 2004, 9:39pm)

Title: Clinical Trials at Jefferson
Post by Lizzie2 on Sep 16^th, 2004, 9:39pm

I'm going to copy and paste something I posted over on OUCH regarding clinical trials for cluster headache at Jefferson Headache Center. This message regards how we have decided to recruit people for studies! Please please read it and PM me!!!! If you are not in cycle right now, please still consider PM'ing me because the studies will be going on for awhile and they may be able to work with you in the future.

I met with Melissa Bloom (a reseasrcher at Jefferson Headache Center) this morning while I was at the headache center. What we feel would be the best way for study recruitment would be if I could give her the addresses of anyone interested in participating in cluster clinical trials. We just want to send out a mailing for now with a little information and her phone number for those interested. She will do an interview over the phone so that a sufferer wouldn't have to go down there for the initial intake interview. This is very exciting!! They are really trying to look into help for clusters more.

PLEASE please please PM me if you would like to receive information. This doesn't obligate you to anything. You'll just get a letter in the mail. I need your full name and address in the PM which I will be providing to Melissa.

Thanks so much!!!

Carrie

Title: Re: Clinical Trials at Jefferson
Post by alleyoop on Sep 16^th, 2004, 9:41pm

I guess you got your puter probs solved.

Title: Re: Clinical Trials at Jefferson
Post by Lizzie2 on Sep 16^th, 2004, 9:48pm

on 09/16/04 at 21:41:58, alleyoop wrote:

I guess you got your puter probs solved.

No, but I was not feeling well today so I wound up sleeping most of the day, and then tonight had to take an online quiz for a class. So the viruses are still there. I'll deal with it later.

Title: Re: Clinical Trials at Jefferson
Post by Lizzie2 on Sep 17^th, 2004, 2:13am

*Bump*

Remember folks, the only way we are going to make headway for cluster research and medications is if we particpate in trials and get the drugs approved to treat clusters. Right now, I can count on one hand the number of drugs in the drug manual that are approved for use in treating clusters. This has vast implications for some insurance companies and for doctors who do not know a lot about clusters. I remember getting annoyed just the other day because I saw a commercial for imitrex and it actually said on the commercial, "Imitrex is only used to treat migraine headaches" or something very close to that effect. That's not sending out a very good message!!!

So please, volunteer for clinical trials if you are able. If you'd like, I could give the information to contact Melissa directly if you'd rather not give me your address to give to her for a mailing. Just let me know!

Thanks!

Carrie/Lizzie2 :)

Title: Re: Clinical Trials at Jefferson
Post by Lizzie2 on Sep 17^th, 2004, 8:27am

*Bump* again :)

Title: Re: Clinical Trials at Jefferson
Post by Lizzie2 on Sep 17^th, 2004, 2:13pm

Update again!

Thanks for the replies I have received so far. We can still use more and more and more! ;) If you reply and wouldn't mind also providing your phone number, that would be great too. I am not giving it out to anyone except Melissa at Jefferson! If you wouldn't mind having someone from the headache center contact you for a trial screening over the phone (since some of you live far), then go ahead and give the number. Otherwise you don't have to and you can still get info in the mail. I plan on asking Melissa if I can post her contact information when I email her here in a few minutes, and then anyone who wanted to could also contact her directly.

Thanks for those who have responded already, and let's get even more involved! :)

Carrie/Lizzie2 :)

Title: Re: Clinical Trials at Jefferson
Post by Lizzie2 on Sep 19^th, 2004, 2:17pm

bump ;)

I have about 6 responses so far. Thanks!! Seriously, you're not committing yourself..just showing interest!

Lizzie :)

Title: Re: Clinical Trials at Jefferson
Post by Jimmy_B on Sep 21^st, 2004, 11:33am

Was just contacted by Jin from Jefferson...got my appointment for Oct. 5th. We'll see how it turns out.

Just found out I can't get roid injections for the 3 blown discs in my neck...while on the study. owwww I think I'm gonna need a PCA Morphine Drip. ;;D

Thanks,

Jim

Title: Re: Clinical Trials at Jefferson
Post by Lizzie2 on Sep 21^st, 2004, 11:40am

on 09/21/04 at 11:33:52, Jimmy_B wrote:

Awww Jim!

Glad she contacted you but sorry bout the steroids! Damn that sucks!!! I didn't qualify for that trial she contacted you about because I haven't had 2 cluster periods in my life (still in the first one since November), but I'd wanted to try. Good luck with it!!!

Glad that you are enrolled in the study...that's exciting :)

Lizzie :)