Dear all,
I have created a protected site at NYU Medical Center where we can gather all contact information on Dent patients to serve as a database of patients.
It can help us disseminate the information to all who are interested in future clinical trials and other important information.
The difference between this Contact Registry and Mayo Clinical Registry is that the Contact Registry requires only name and contact information but not any clinical data. It takes minutes to register and it can be of help for the future.
The link is:
http://medicine.med.nyu.edu/nephrology/research/current/Dent_registry/ContactRegistryAgreement
Lada