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The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

CLL Patient 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.

FEATURE

CLL Society Community Profile Questionnaire

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.

Paid Research Opportunities

Help Improve Clinical Trials for Leukemia and Lymphoma Patients – Your Story Matters

Pharma Value Partners (PVP) is inviting people with Diffuse Large B-Cell-Richters Transformation and their care partners to share your treatment experiences in a 90-minute online interview.

By participating, you’ll contribute to:

  • Highlighting barriers and improving clinical trial experiences for future patients
  • Shaping clinical trials to better reflect the real patient journey

 

Your voice is key to developing new therapies and making trials more effective and inclusive. You do not need to have experience with clinical trials to participate. Participants must live in either the US, Spain, Netherlands, Belgium, or Finland. Each participant will receive $95 USD; please enquire for the specific compensation rate for your country if outside of the US. If you are eligible and interested, please contact [email protected].


CLL Care Partner Survey Opportunity

Virtue Research is conducting a survey to gain insights into the treatment and management of CLL from a care partner’s perspective. A care partner can be anyone that helps with daily tasks/medical care management for those diagnosed with CLL. The goal of the research is to understand the awareness of treatment options and the experiences associated with this diagnosis.

This quick survey should take 25-30 minutes and compensation of $56 is offered to those who qualify and complete the online survey. Your participation will enhance our understanding and help develop better strategies and solutions for those affected by CLL. Your willingness to share your experiences is appreciated. If you have any questions, please contact [email protected] with the reference CLLP1684. The survey opportunity closes on November 29th. Here is the link to start.


CLL Patients and Care Partners – Paid Research Interview Opportunity

Pillar Patient Advocates is seeking 18 patients or care partners of loved ones to participate in a 60-minute phone/web interview to share their opinions. Participants are paid $125 in appreciation of their input and time. If interested, please email Christine at [email protected]. Be sure to include your phone number and time zone so a Patient Liaison can reach out to you. We will go through a few screening questions prior to scheduling the actual interview. This study is for US Residents only.


Invivyd’s COVID-19 Prevention and Registry Study

If you have a condition that indicates you are immunocompromised, and you have received a COVID-19 booster vaccine in the last 6-7 weeks, or plan to receive a booster in the near future, you may be eligible for free antibody testing and the opportunity for future participation in COVID-19 prevention studies. Compensation includes a free post booster antibody test and $25 in the form of a virtual gift card. Learn more here.


Are You Undergoing Treatment for a Blood Cancer Diagnosis and Experiencing Poor Sleep?

Researchers at the Mays Cancer Center are seeking US-based adults diagnosed with blood cancer and experiencing sleep disturbance to participate in a 20-week remote study testing a digital wellness intervention. Participants in this study will be assigned to use one of two digital wellness apps 10 minutes per day over 8-weeks to determine if it can help improve sleep, immune function, and other psychological and emotional outcomes.

This study is completely remote (there are no in-person visits with the research team) and patients from across the USA are invited.

Participating in this research will help build knowledge about new ways to manage sleep problems in people diagnosed with blood cancer.

You may qualify for the study if you:

• Are over 18 and reside in the USA
• Have a blood cancer diagnosis and are currently receiving treatment
• Experience sleep disturbance, such as difficulty falling asleep, staying asleep, or poor quality of sleep
• Own a smartphone
• Are willing to complete the study procedures

Participation involves:

• One brief 30-minute virtual meeting with a research assistant
• Completing online surveys
• Providing three blood samples over the 20-week study at a lab close to you
• Tracking sleep using a small device and daily diary
• Using a wellness app for 10 minutes per day for 8-weeks

Participants who qualify and enroll in the study will be compensated at regular intervals, up to $100.

If you are interested in learning more or finding out if you are eligible, you can complete the screening survey. 
You can also contact us by email at [email protected] or visit our study website: https://cancer.uthscsa.edu/heme-study

ADDITIONAL READING

A major pharmaceutical manufacturer has commissioned market research to understand the unique issues and concerns of those diagnosed CLL. Your participation in this project will help to expand on new treatments, as well as enhance awareness and improve education about Blood Cancers.
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