Monday, March 23, 2015

Experience with Idelalisib (Zydelig) in CLL (chronic lymphocytic leukemia)? A chance to can help fellow patients in Canada.

I received this email today with a link to a survey for those of us who have had experience with idelalisib. It is a chance to help our fellow patients with CLL in Canada. 
The email speaks for itself. Please help if you can.
Hello Dr. Koffman,
My name is Elizabeth Lye and I am the Scientific Advisor with Lymphoma Canada. I am reaching out to you to see if you can help put us in touch with patients who may have experience with idelalisib (Zydelig) for CLL. This treatment is not currently available in Canada and Lymphoma Canada is working to help Canadians gain access to this treatment. 
If you are not familiar already, the pan-Canadian Oncology Drug Review (pCODR) makes recommendations to the provinces and territories to help them decide whether they will provide funding for new cancer drugs in Canada. Understanding the experiences of patients is a key element in the pCODR review process and pCODR allows patient groups to do this through "patient submissions".

In order for Lymphoma Canada to have a strong submission, we really need to have patients who have direct experience with idelalisib (Zydelig) to complete an online survey or to participate in an interview with one of our staff. To ensure patient privacy and confidentiality, individual responses will not be identifiable.
I am writing to see if you would be able to help us find patients to participate in our survey.  Given that not a lot of people in Canada have had experience with idelalisib, we are seeking input from patients internationally to complete our survey to support our government submission. 

Would it be possible to post the link to the survey on any of the patient forums you post to? Or perhaps you have some other ideas that may help us locate patients who have experience with idelalisib (Zydelig) for CLL.

As always, the timelines are very tight. The closing date for the surveys is April 7th. The link to the survey is:

Thank you in advance for your consideration of our request.

Kind regards,


image010Elizabeth Lye
Scientific Advisor
Lymphoma Canada
7111 Syntex Dr., Suite 351, Mississauga
ON, L5N 8C3
Phone 905.822.5135 x 3
Toll-Free 1-866-659-5556


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