CLL patient and carer surveys to aid us gain access to Ibrutinib for first line and Venetoclax for relapsed/refractory treatment of CLL


The CLL Patient Advocacy Group Board (Canada) and the CLL Support Association (UK) would like to inform you of two surveys we are conducting, one for patients and one for care partners. You do NOT need to have experience of treatment or these drugs to complete the survey. You do NOT need to live in Canada or the UK to complete the survey.

These surveys will be used as part of the Chronic Lymphocytic Leukemia Patient Advocacy Group (CLL PAG) formal submission to the pan-CanadianOncology Drug Review (pCODR). The pan-Canadian Oncology Drug Review (pCODR) assesses cancer drugs and makes recommendations to the provinces and territories to guide their drug funding decisions. The CLL Support Association based in the United Kingdom will also use the data to prepare their submission to their drug review board NICE.

Ibrutinib (Imbruvica) for First-Line CLL/SLL and Venetoclax (ABT-199) for relapsed/refractory CLL/SLL for CLL/SLL patients will be reviewed by pCODR for funding for the treatment of chronic lymphocytic leukemia in the next few months. These two new treatments have now entered the UK's NICE appraisal scoping system and CLLSA are involved in this in the lead up to a potential full appraisal, evaluation and consultation with CLLSA later this year for England and Wales access. 

Patient and care partner input is important to pCODR, as it ensures that those reviewing the drug can appreciate the impact (both good and bad) that the drug under review may have on those receiving it, as well as on those caring for patients living with CLL/SLL.

Please feel free to forward the surveys to other CLL/SLL patients and care partners to complete. 


 Care Partners

Thank you for taking time, in the next few days, to complete the survey. The survey will take 5-15 minutes depending on your treatment experience. The survey will be open until Wednesday, March 30, 2016.

We would be happy to answer any questions   

Canada & non UK - 

UK -


Deborah Baker 
on behalf of CLL Patient Advocacy Group