ShareMD Patient Registry
Finding a cure for Synovial Sarcoma will require the generation, collection and use of medical history data from patients who are dealing with this disease. It is our goal to create a registry / database of patient information that will be made available to physicians and researchers in their efforts to find a cure. This program is a volunteer, patient and parent-led initiative and is not associated with any medical institution. If you are interested in participating in the ShareMD Patient Registry, please email us for more information.
How Does ShareMD Work?
- All participation and data sharing is completely voluntary
- After contacting us we will email you a consent form to sign and return
- Pending receipt of the consent form, we will send you a questionnaire relating to your disease progression
- We are available through email or phone to help with any questions
- All data will be entered into our secure database that is HIPAA compliant
- We will contact you every 6 months for updates on your specific situation
- Our research project is registered and approved by Hummingbird IRB
- This patient / parent-led initiative is voluntary and not associated with any medical institution
- The lead person for this project is L4OF team member Dr. Michelle Choe