Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’s Hospital of Chicago would like to invite you to participate in a research study to improve bone health in EB. The purpose of this study is to get expertise from adult patients, caregivers, and healthcare professionals to form guidelines on EB bone health management. Using the Delphi method, this research will gather input through several rounds of surveys and expert feedback.
If you choose to be in the study, you will complete approximately 2-5 survey(s). Initial surveys will ask you to provide feedback on current practices on bone health in EB. Future surveys will then ask you to choose options from strongly agree to strongly disagree on statements pertaining to management of bone health in EB. There will also be optional comment sections if you have any suggestions on each recommendation.
Eligibility:
- If you are a patient with EB, you must be 18 or older.
- If you are a caregiver or parent, your child must be 6–18 years old to qualify.
- Are able to complete a questionnaire in English
Survey overview:
- Will take ~20 minutes to complete
- Is voluntary
- Is confidential (your response will be anonymous and will not be shared)
- Has no compensation
- Deadline to complete the survey: June 15, 2025
For questions, contact:
📧 Grace Lank: grace.lank@northwestern.edu
📧 Lydia Rabbaa Khabbaz: lydia.rabbaakhabbaz@northwestern.edu
