Dear Undiagnosed Rare Disease Registry Participant:
You are receiving this note because the Independent Institutional Review Board (IRB) that has been overseeing the Undiagnosed Rare Disease Registry has changed.
The IRB is a group of people who are independent of the researchers, and who reviewed the plan for the registry to make sure that it met standards for maintaining your privacy and keeping your information secure.
A change of IRB does not change the risk of the study, nor do we anticipate it would change anything that might make you rethink your participation. This letter is just to inform you that an IRB called North Star Review Board will be overseeing the registry from now on. If you have questions about how your privacy or other rights are being protected, please contact North Star at the address or phone number below. If you have questions about other aspects of the study or your participation, please use the information that was included in the original informed consent form that you signed when you joined the study.
Thank you again for your valuable contributions to research and for helping researchers learn about the condition being studied.
Please keep this letter with your consent in case you need to contact us in the future.
Call or write:
Toll free telephone #: 877-673-8439
You can view the letter here