If you have any questions about the registration process or about participation in the Registry:
please contact the registry administrator at firstname.lastname@example.org or by phone at (843) 302-6295.
To inquire about rights as a participant in the registry, please contact the IRB for this study at:
An Institutional Review Board, for purpose of protecting your rights, has reviewed this Study. An institutional review board is a group of people who are responsible for protecting the rights and welfare of people who participate in studies.
Visit the National Organization for Rare Disorders home page at rarediseases.org.