There is a “National Registry of Patients with RD” in which patients and federations of patients can voluntarily include their data. The growth of the Registry is necessary to know the dimensions of the problem, so it is essential that the family doctor encourages their patients with RD to enter their data in the registry, even if he has to help in this simple process. If you click HERE you will access the registration page, where you can register the patient online (time consuming) or through this other link from where you can download a simple information kit consisting of brief instructions, a collection sheet of data and informed consent. In this latter option the patient can fill the documents and send them to the IIER on his own, or could be assisted by the doctor on a scheduled visit.
