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SIMPLICITY Study : Anyone in this?


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#1 LivingWellWithCML

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Posted 17 February 2012 - 09:08 PM

Hi everyone,

At my appointment today, I was asked to participate in a study called:

  • Studying Interventions for Managing Patients with CML in CP Phase: The 5-Year Prospective Cohort Study (SIMPLICITY)

Basically, participants complete questionnaires every 6 months for the 5 year period ... assuming that the participant does not enter a clinical trial.

Anyone else been asked to do this, or are already participating in it?  It says they are enrolling 1,400 patients across the Americas and Europe.  BMS is the sponsor.

Just wondering...


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#2 hannibellemo

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Posted 17 February 2012 - 09:19 PM

Hi, Dan, yes I enrolled in October. I've done my initial survey and it sounds like I will only be in the study for two years since it follows people since they began treatment for five years. As I understand it the previous years info will be gathered from my records.

It seemed simple enough and I hope some good information will result.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#3 LivingWellWithCML

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Posted 17 February 2012 - 09:30 PM

Cool, thanks.  I will probably do it as well...it seems uhhhhhh "SIMPLE" enough.  I get a little concerned about the privacy stuff, but other studies have been beneficial to me, and those patients were willing to take the risk.  Thanks Pat!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#4 Susan61

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Posted 17 February 2012 - 11:30 PM

Hi:  I did not get a request for this Simplicity, but I did get a offer to do a documentary film for my story with CML.

They wanted me to travel to do filming, and I had to refuse it.  There would be no money paid for any of it, and it would have cost me money to do it. They wanted me to volunteer to help others with CML.  I just told them that I help by participating in discussion boards for years now.  Did not sound right to me anyhow.

Susan



#5 hannibellemo

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Posted 18 February 2012 - 09:23 AM

Susan, you win! You always have the most interesting things happen to you. Too bad there was no money and that it sounded "shifty" all around. Who made this offer, if I may ask? Was it a drug company? Web site? No specific names necessary.

Dan, I wonder where the Simplicity name comes from? I've noticed the Master Card you get for the $25 or so you get each time you do a survey is also called Simplicity. I just got the card even though I did the intake and first survey in October. That was a nice little perk anyway.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#6 Susan61

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Posted 18 February 2012 - 02:24 PM

Hi Pat:  Thats the whole thing that no name of the organization or whatever you would call it.  It was just a woman saying she was trying to set all of this up for someone to do this film.  No names were ever mentioned, until I asked about payment etc.  Then she gave me some names, but nothing related to a drug company.  no websites. IT was so evasive.

She found me somehow from one of my postings somewhere about being in the clinical trial for Gleevec back in 2000.

I think thats what drew the interest.

     I wish I did not have so many interesting things happening to me.  My husband says I draw these people in all the time.  I come home from shopping for groceries, and always have a story for him.  People just come up to me to ask me to help them with different things.  Oh My Gosh!!  I just had a knock at my door, and they are collecting for a young kid at the junior high school who is not doing well with some type of cancer.  She did not know what it was called, she said she could not pronounce it correctly.  I told her to have faith because so much is being done for Cancer, and I just briefly told her that I have had Leukemia for 13 years, and there is hope.  Now she asked me if I could come to a Fashion Show at the High School to speak about Cancer.  She never told me what day etc.

See what I mean about how I get into this stuff.  I do try to encourage and help whenever I can.

Susan






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