New Survey on the use of darolutamide in the treatment of metastatic castration-sensitive prostate cancer

The Canadian Cancer Society is conducting a survey on the advantages and disadvantages of the drug darolutamide for treating metastatic castration-sensitive prostate cancer.  Patients and caregivers do not have to have experience with the drug to complete the survey, as information on their satisfaction with current treatments is valuable on its own.  Survey participants also may have an opportunity to give testimonials or be interviewed about their experience with darolutamide or their current treatments.  Results of the survey could lead to recommendations for darolutamide to be covered in Canada on public drug plans for people with this subset of prostate cancer. For information on participating in this survey, continue below.

Hello,

My name is Sasha Frost and I am the Sr Advocacy Specialist (Patient Engagement) for the Canadian Cancer Society. To better inform the Canadian Agency for Drugs and Technologies in Health (CADTH) and l’Institut national d’excellence en sa nté et en services sociaux (INESSS), the Canadian Cancer Society has launched a survey to understand the experience of people impacted by metastatic castration-sensitive prostate cancer. Metastatic prostate cancer is prostate cancer that has spread to other parts of the body. Castration-sensitive prostate cancer is cancer that is being controlled by keeping the testosterone level as low as would be expected if the testicles were removed (called the castrate level). We are also seeking feedback on the advantages and disadvantages of the drug darolutamide (NUBEQA) from those who have had experience with it. The patient or caregiver does not have to have experience with the drug to complete the survey, as information on their satisfaction with current treatments is valuable on its own. 

Patients living with and beyond cancer as well as caregivers have first-hand experience of life with cancer and are well-positioned to describe the benefits and drawbacks of currently available treatments and help assess new treatments. Patient and caregiver feedback is critical and will help CADTH and INESSS develop drug funding recommendations in Canada. This survey will help CADTH and INESSS decide if they should recommend that darolutamide (NUBEQA) be covered in Canada on public drug plans for people with this subset of prostate cancer.

If you have cancer patients or their caregivers in your network, we would greatly appreciate if you would share this new online survey. The survey is available in French and English. Please feel free to share this opportunity with patients, support groups or other networks you are aware of to ensure patient voices are heard.

The survey will take about 15-20 minutes to complete, and the deadline for completion is June 30, 2022. Participation is completely voluntary and responses are anonymous. We follow and respect all standards of personal data protection. For more information, view our privacy policy. For more information about providing feedback on cancer drugs, please visit cancer.ca.

Please note that this survey is not to endorse any specific drug or treatment and is for evaluation only.

We are also offering two additional ways for patients and caregivers to participate in this process outside of the survey.

  1. We will be collecting testimonials from people with metastatic castration-sensitive prostate cancer on their experience with darolutamide (NUBEQA) or their experience/satisfaction with current treatments. If you have patients in your network that would like to share a written testimonial, please share them with me via email with identifiers removed for anonymity.
  2. We will also be conducting interviews for people that have metastatic castration sensitive prostate cancer and have tried darolutamide (NUBEQA). Patients can sign up for an interview time using this interview form.

We offer our sincere thanks in advance for your time. If you have any questions about the survey, submitting a testimonial, or sharing the interview opportunity please contact me via email or by phone.

Thank you,

Sasha Frost (She/Her)
Sr Advocacy Specialist (Public Engagement) / spécialiste principale, Défense de l’intérêt public (engagement public)
Canadian Cancer Society / Société canadienne du cancer
.(JavaScript must be enabled to view this email address)
(905) 259-2721