We are sharing an opportunity to participate in the University of Alabama at Birmingham (UAB) Survivorship Study—a vital research effort focused on understanding the experiences, challenges, and needs of individuals diagnosed with Erdheim-Chester Disease (ECD).
Your insights can make a meaningful impact. You’ll help researchers create more effective resources, enhance support services, and improve long-term care for ECD patients worldwide.
If you’re still considering participation, we warmly encourage you to take that next step.
Your voice matters—your experience is both unique and deeply valuable
Why is this study important to you?
This study is important because it helps gain a deeper understanding of the real-life health challenges that people living with Erdheim-Chester Disease (ECD) face on a daily basis. By sharing your experiences, you are helping doctors and researchers find better ways to care for ECD patients—now and in the future. Together, we can work toward more effective treatments, better support, and a stronger understanding of this rare disease.
Who can participate?
Any English-speaking individual diagnosed with ECD can participate. Next of kin of a deceased patient can also participate on behalf of their loved one.
What is the process?
- You give the ECDGA permission to share your contact information with the University of Alabama at Birmingham (UAB).
- UAB will email you a link to the survey.
- You complete the survey and submit it directly to UAB.
- UAB will gather and analyze all the responses.
- UAB will publish the results.
- The findings will be made available to the global ECD community and healthcare providers—helping improve care and support for all ECD patients.
Where does the Research take place?
By completing a simple 45-minute survey—from the comfort and privacy of your home—you can help shape the future of ECD care and research. The 45-minute survey does not need to be completed all at once—you can save your progress and return at any time to finish it at your convenience.
You can take the survey in the way that works best for you:
✔️ Online
✔️ On paper
✔️ Over the phone
When will the study be completed?
The goal is to enroll 400 individuals who are living with, or who have passed away from, Erdheim-Chester Disease (ECD). Reaching this number is expected to take approximately 2 to 4 years from now. However, with the support of the ECD community—and that includes you—we hope to reach our enrollment goal even sooner. By choosing to participate today, you can play a vital role in helping accelerate progress and improving care for everyone affected by ECD.
What is the current status?
So far, 217 individuals from the ECD community have agreed to participate in the study. Of those, 135 have completed the survey and returned it to the University of Alabama at Birmingham (UAB). We’re grateful for this incredible response—and with your help, we can keep the momentum going and reach our enrollment goal even faster.
Participants may be eligible for a gift card.
To show appreciation, participants may be eligible to receive a gift card upon survey completion. Your participation not only helps advance research—it may also come with a small token of appreciation.
Have a question? Submit your question to belinda.cobb@erdheim-chester.org