Survey for CLL patients having taken Venetocla... - CLL Support

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Survey for CLL patients having taken Venetoclax or Acalabrutinib

CLL_Canada_Group•

5 years ago•15 Replies

CLL/SLL Patient Survey

If you have CLL or SLL and have been treated with the following therapies, you can help by completing our survey:

Venetoclax (Venclexta) + obinutuzumab (Gazyva) for first-line treatment of CLL/SLL

Acalabrutinib (Calquence) with or without obinutuzumab (Gazyva) for first-line treatment of CLL/SLL

Acalabrutinib (Calquence) monotherapy for treatment of relapsed/refractory CLL/SLL

Lymphoma Canada and CLL Patient Advocacy Group (CLLPAG) are preparing submissions for the panCanadian Oncology Drug Review (pCODR) so that CLL/SLL patients in Canada can gain access to these therapies.

You can help by completing our survey, which will provide us with the patient input required for the submission. pCODR uses this information to help them make recommendations to the provinces and territories regarding funding for new cancer drugs. You do not need to live in Canada to complete this survey.

BY COMPLETING THIS SURVEY, YOU ARE PART OF THE PROCESS THAT MAY HELP PATIENTS GAIN ACCESS TO THESE NEW TREATMENTS IN CANADA.

The survey will be open until midnight Pacific Time on Friday, February 7th, 2020 and should only take 10 minutes of your time.

You may access the survey by clicking the link below.

surveymonkey.com/r/CLLCAN2020

Thank you!

Rebecca Drotos

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CLL_Canada_Group

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15 Replies

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sllincolorado5 years ago

Thank you for conducting this survey.

I was on Ibrutinib for one month and then switched to acalabrutinib. Do you want me to select that acalabrutinib was first line or for refractory or none of the above. The reason I switched was side effects. I know there are many other patients in similar situations. They switched not because of refractory but because of inability to handle side effects.

CLL_Canada_Group• in reply tosllincolorado5 years ago

This counts as front line for the purpose of the survey - thanks!

CLL_Canada_Group• in reply tosllincolorado5 years ago

Hi sllincolorado - I was wrong. Our survey must be for the purposes of the Canadian submission which was very specific, and therefore excludes any indication OTHER than those specifically indicated in the survey. Sorry for the confusion! - Rebecca

aquafinn5 years ago

Rebecca,

I am currently in EA9161 clinical trial first line. I was randomized for the O+I+V. Should I do the survey?

CLL_Canada_Group• in reply toaquafinn5 years ago

Yes, i believe anyone using venetoclax can respond.

CLL_Canada_Group• in reply toaquafinn5 years ago

Hi aquafinn - clarification. The indication we need to survey is specific, so go ahead and take the survey and if the questions do not allow you to proceed, just answer them correctly. Apologies if i was in error before. - Rebecca

Jackpot5 years ago

Hi. I am in a clinical trial and take acalabrutinib and venetoclax as a front tine treatment. Should I do the survey?

CLL_Canada_Group• in reply toJackpot5 years ago

I believe so, yes. There are places where you can explain your circumstance using text input. We will certainly re-examine our click and skip questions for future surveys ... Let us know if the logic does not allow you to answer the way you wish. We can revisit some of the survey questions and click logic .. Thank you!!

Jackpot• in reply toCLL_Canada_Group5 years ago

Thank you. I completed the survey stating that I also take venetoclax as part of a clinical trial.

bulldozer42645 years ago

Looks like your survey has missed all those people who switched from Ibrutinib to Acalabrutinib because of adverse or undesirable side effects. Too bad, because there are many who are in that situation.

CLL_Canada_Group• in reply tobulldozer42645 years ago

Hi - I have changed my response here. The survey supports a drug submission in Canada and as such has to be for the exact indication as submitted - hence the questions as they are. I encourage all to take the survey and answer the questions exactly, the question logic should help figure out if the survey fits your situation. Sorry for any confusion ... --Rebecca