If you are living with idiopathic multicentric Castleman Disease (iMCD), we need your help!
The CDCN is collaborating with researchers and a pharmaceutical company to support a study aimed at better understanding the challenges caused by iMCD symptoms. As part of this effort, we are helping to share information about the study and invite you to participate in an online survey.
The iMCD Symptom Burden Study (ISBUS: NCT05995834) aims to create a new tool to better understand and measure the symptoms of iMCD from the patient’s perspective. This tool is designed specifically for people living with iMCD and will help improve communication with your doctor. It will provide a clearer picture of how severe your symptoms are at different stages of diagnosis, treatment, and progression.
Here’s what you need to know about the online survey:
- We want to learn about your personal experience with iMCD symptoms.
- Study team, working closely with both patients and medical experts, is developing this tool to capture how these symptoms impact your daily life.
- Your input will help create a tool that assesses your symptoms more accurately and supports your doctor in making better decisions for managing your condition.
- The survey will take less than an hour to complete. As a thank-you for your time, you will receive a $50 Amazon e-voucher.
If you are interested in participating, here’s how to get started:
- Complete the consent form and expression of interest by visiting this link https://bit.ly/ISBUS-US.
- A researcher will reach out to you to discuss the next steps.
For more detailed information please get in touch with Dr Philip Powell at The University of Sheffield: p.a.powell@sheffield.ac.uk