Contact

If you have any questions about the registration process or about participation in the Registry:

please contact the registry administrator at info@pwsregistry.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.