As a valued member of our community, CLL Society is asking for your participation in completing a profile questionnaire.
All individuals who access the services of CLL Society are encouraged to complete the questionnaire as doing so will aid CLL Society and have benefits for you as well. Please note, a portion of the questionnaire is specifically intended to be answered by those living with CLL / SLL.
Why is CLL Society asking me to complete a profile questionnaire?
The purpose of this questionnaire is to develop a better understanding of the community we serve. As part of the questionnaire, some of the information you’ll be asked to provide includes if you have received treatment for your CLL / SLL and if so what kind of treatment(s), what testing you’ve received, and the type of healthcare setting where you are receiving care, along with demographic information.
By collecting this information and learning about people’s experiences and circumstances, CLL Society will be able to enhance our efforts, education, and programs in a manner that better fits the needs of our community.
De-identified demographic and CLL-specific data on our community in the aggregate can also help CLL Society demonstrate the valuable support we provide to individuals impacted by CLL / SLL to secure funding from various sources, including but not limited to foundation grants and corporations. In turn, increased funding will enable the expansion of our work to improve the lives of CLL / SLL patients and care partners.
What is in it for me?
While your participation in the survey will help CLL Society, there are also benefits for you in completing the profile questionnaire. Following completion of the questionnaire, you will be prompted to set up an account login with CLL Society. Your CLL Society account will provide you access to the following:
- Ability to update your contact information with CLL Society (name, email, mailing address, phone number)
- View your donation history and start/update a recurring donation schedule with CLL Society
As information may change regarding treatment, etc., you can return to the questionnaire by logging into your account to update your profile.
Privacy and Confidentiality
CLL Society takes the protection of personal information very seriously. All responses to the profile questionnaire are confidential, and no identifiable information is shared outside of CLL Society. Profile questionnaire responses will be stored on a secure platform. Any data that is reported externally would be in the aggregate and not linked to identifiable personal information. CLL Society is committed to taking all possible precautions to protect the privacy of individual information. Read CLL Society’s privacy statement.
Should opportunities arise where individuals are eligible to participate in external projects based on the information provided on the profile questionnaire, CLL Society will contact appropriate individuals before disclosing any personal or identifiable information. Under no circumstances will an individual be required to participate in an external project based on the information provided on the profile questionnaire.
