You can help researchers and drug developers learn about the patient experience to help advance science in diagnosis, treatment and seeking a cure by:
- Providing patient experience data
- Learn about and join clinical trials
Read on to learn how you can get involved.
Understanding the patient journey is part of the CL Foundation's mission to improve the lives of those affected by cutaneous lymphoma.
One of the ways we accomplish this goal is by collaborating with other patient organizations with their initiatives and encourage you to share your experience. These efforts provide valuable insights into your challenges and offer guidance for developing patient-centered approaches to care. Your experiences matter. By participating in surveys you are shaping the future of cutaneous lymphoma care.
Make YOUR voice heard!
Patient Experience Posters
Patient experience stories and data are developed into posters (abstracts) that demonstrate the reality, and the uniqueness, of the individual experience of the disease. The collected data can show the differences and commonalities in a measurable way and can help influence decision-makers, clinicians, and researchers. These posters are displayed at medical and research related conferences. See example
Submit your patient experience story
The Financial Impact and Challenges of Cutaneous Lymphoma: A Patient’s Perspective
Many people living with cutaneous lymphoma face medical expenses, travel costs, time lost from work, and emotional stress—but there is little research to show exactly how much of a burden this disease creates. You can help reveal the true cost of living with cutaneous lymphoma by participating in "The Financial Impact and Challenges of Cutaneous Lymphoma: A Patient’s Perspective" survey.
Take Survey
IDEOM - Invitation to Participate Health Related Quality of Life Patient Survey
Currently there is no consensus on how to assess quality of life for patients living with CTCL (mycosis fungoides or Sézary syndrome). There is not agreement on what concepts are most important to patients, nor how to assess or measure those concepts.
To overcome these limitations, the IDEOM CTCL Workgroup is seeking to develop a standardized outcome set for health-related quality of life concepts to be used in all clinical trials. The standardized outcome set will be a list of items that must be assessed in all clinical trials. Your participation is critical to the strength of their study and ensures that patients are properly represented in this process.
Learn how you can help.
Your participation in the following projects made a difference:
Global Research on the Impact of Dermatological Diseases (GRIDD)
Abstract on Fatigue - Outcome of Lymphoma Coalition's 2022 Global Patient Survey
Clinical trials are research studies that investigate new or experimental treatments in patients living with a specific disease such as cutaneous lymphoma. These studies are important because they contribute to the overall knowledge and progress of the understanding of cutaneous lymphoma as well as playing an instrumental role in the development and FDA (Food and Drug Administration) approval of new therapies. People who are willing to participate in clinical trials can benefit personally while helping all cutaneous lymphoma patients and potentially furthering important cutaneous lymphoma research.