Dear Friend,
We are a group of doctors and researchers committed to developing therapies that improve the quality of life of people with myelodysplastic syndromes (MDS).
The International Consortium for MDS (icMDS) brings together a global panel of experts with deep expertise in both preclinical and clinical MDS research. Consortium members are basic and translational scientists, specialists in population-based and registry research, clinical effectiveness and patient-reported outcomes experts, clinical trialists, hematopathologists, and other key stakeholders. United by a shared commitment, the icMDS works collaboratively to drive efficient, patient-centered clinical research and accelerate the development of effective treatments for MDS.
We need your valuable input to help us understand how your diagnosis or different treatments affect your quality of life. Specifically, we are working with the MDS Foundation and the Aplastic Anemia & MDS International Foundation to create a brief questionnaire that reflects the symptoms and challenges that matter most to people like you.
Your feedback is essential in shaping this questionnaire, ensuring it captures the aspects of MDS that have a significant impact on your daily life and well-being.
Here’s how you can help:
- First, we will ask a few questions about your diagnosis and treatment.
- Next, we’ll ask you to rate to what extent the listed symptoms and potential impairments affect your life on a scale from 1 to 9 (where 1 = "not important / doesn’t affect my life" and 9 = "very important / affects my life very much"). We will also ask if there are other important aspects of your MDS that affect your quality of life and that you would like to add in addition to those covered in this survey.
The survey should take approximately 20 minutes to complete and will be completely anonymous. If needed, a caregiver may assist you in completing this survey - however, please make sure that the responses reflect your own experiences.
Click “NEXT” to view the Information Sheet. After reading it, you can decide whether to participate. If you agree, the survey will begin.
Thank you very much!
Thank you very much!