Surveys

Surveys are your chance to help the community that treats CLL to better understand what is important to the patient and the caregiver. Some are short. Some are long. You may even get paid for doing some of them!

CLL Society wants to hear from you. Part of our organization’s mission is to increase patient education and research. We need your support to increase the body of knowledge for patients and caregivers affected by CLL. Please see current surveys below that help us aggregate information on a variety of topics to inform our field and CLL Society, so we can better serve this community.

Test Before Treat™ Survey

How much do you know about the critical tests that can predict which patients will do well on or fail with certain medications? Prognostic testing should be done before each and every treatment decision; share your experience and test your knowledge by completing the Test Before Treat™ Survey!

Paid Research Opportunities

Share Your Experiences With CLL

Pinpoint Patient Recruiting, a market research recruitment company, is looking to speak with people who have been diagnosed with chronic lymphocytic leukemia (CLL) to participate in a 60-minute virtual interview about their experience.

If you have been diagnosed with CLL and live in the US, you may be eligible to participate. Those who qualify and participate in the study will receive $125 as a thank you. All information and responses will remain confidential.

Interested?
To see if you qualify for the study or to get more information, please visit pinpointpatientrecruiting.com/cll-interview-cllsociety or contact Jenny Fowle at jenny@pinpointpatientrecruiting.com.


Survey Opportunity

At Global Patients, we are conducting a new study and would really value your opinion. The purpose of the research is to account the experiences and preferences of people diagnosed with Chronic Lymphocytic Leukemia (CLL) in the US ,UK and AUSTRALIA.

The study will take the form of a 30-minute online. As a token of appreciation for their time, participants will receive a 75 USD/ 50GBP / 115AUD honorarium paid upon completion of the interview.

Any information you provide us with will be treated as confidential and taking this opportunity to have your voice heard would greatly help us further our research. Your participation would be hugely appreciated. If you have any questions, please contact us at rebeca@global-patients.com. If you are selected to participate, please let CLL Society know by emailing support@cllsociety.org with the subject line Global Patients – US/UK/Australia Study Participation.


IQVIA Study on Infusion Treatments

A study conducted by IQVIA, a healthcare research firm on behalf of Takeda, is aiming to better understand the factors patients take into consideration when deciding the setting where to receive an infusion treatment.

We are currently searching for Chronic Lymphocytic Leukemia patients in the US who currently receive infusion treatments into a vein for a 40-minute online survey. To assess this, the study team is inviting patients to complete a one-time, online survey exploring patient’s preferences for receiving an infusion treatment in different settings.

The team is interested in recruiting patients who currently receive infusion treatments into a vein to avoid sudden worsening of their health condition. The survey will include two different choice exercises, where patients will be asked to select their preferred choices in different scenarios, a few questions about the scenarios, some questions about themselves, their health condition, and their current treatment.

The survey is estimated to take no longer than 45 minutes to complete and the patient will receive 50 USD for taking part in the study with a virtual gift card. If interested, please contact monica@global-patients.com with the code CLL Society. If you are selected to participate, please let CLL Society know by emailing support@cllsociety.org with the subject line IQVIA Study Participation.


Global Patients Qualitative Interview

Global Patients is conducting qualitative interviews with patients with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL). The 90-minute interview includes a short online survey with patients in the US.

  • Have you been diagnosed with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL)?
  • Have you had at least 2 previous rounds of treatment for your CLL or SLL?
  • Do you know the names of your current and previous medications for CLL or SLL? Or are you willing and able to obtain this information from your treating physician?
  • Are you an adult of legal age?

If so, you may be eligible to participate in a one-time, 90-minute interview. Interviews would be conducted online/over the telephone using MS Teams, and you will be asked to complete a short online survey prior to your interview. To be eligible, you will need to know the names of your previous and current medications.

The purpose of this study is to learn more about the experiences of people living with these conditions and to describe the impact of their treatments. Eligible participants who participate in the interview will receive 150 USD for their participation.

If you would be interested in participating or would like more information about the study, please contact miryam@global-patients.com and let them know you found the study through CLL Society. If you are selected to participate, please let CLL Society know by emailing support@cllsociety.org with the subject line Global Patients Study Participation.


Lymfit: Exercise Intervention Study

A study team from McGill University (QC) is conducting a virtual exercise intervention study named Lymfit. The intervention aims to encourage young adults with lymphoma to be physically active and to increase their overall fitness and quality of life. We are recruiting lymphoma patients of any sub-type aged 18 to 39 who are at the end of their treatment and up to six months post-treatment.

Participants in the study will receive a Fitbit to keep as part of their participation, they will receive a personalized exercise program based on their baseline fitness level, and will be followed by a kinesiologist (via zoom) for 12 weeks to review their progress.

If you are interested or if you know someone who might be interested to participate in this study, please contact the research assistant of this study: Wing-Lam Tock at wing.tock@mcgill.ca or 450-626-8117 and let them know you found the study through CLL Society. If you are selected to participate, please let CLL Society know by emailing support@cllsociety.org with the subject line Lymfit Study Participation.

Other Research Opportunities

CAR T-Cell Therapy Clinical Trial Patient Experience Research Opportunity

GRYT Health, in partnership with Syneos Health, are looking for patients considering, participating in, or that have participated in a CAR T-cell therapy clinical trial within the United States. Participation entails a 1-hour video-based interview, two (2) 1.5-hour video-based group discussions, and four (4) 30 to 40-minute surveys. These engagements will be spread out over the course of approximately 12 months.

Findings from this project will be published to help improve the CAR T-cell therapy clinical trial experience for other patients. Results and publications will be shared directly with project participants.

You can view more information and check your eligibility here: https://projects.grythealth.com/cpep

If there are any questions regarding this research, you can email us at projects@grythealth.com or give us a call at 1-844-487-4798. Please let GRYT Health know you found the study through CLL Society. If you are selected to participate, please let CLL Society know by emailing support@cllsociety.org with the subject line CAR-T-Cell Therapy Experience Research Opportunity. 

ADDITIONAL READING

Pinpoint Patient Recruiting, a market research recruitment company, is looking to speak with people who have been diagnosed with chronic lymphocytic leukemia (CLL) to participate in a 60-minute virtual interview about their experience.
Q2 Reader Poll Results: Shared Decision Making During March through June 2019, the CLL Society conducted a poll among readers of The CLL Society Tribune. There were 84 complete responses with 94% of the responses from patients and 6% of the responses from caregivers. The respondents included 60% who are