Access to the Program

Patients that want to be considered for SpainUDP Program should register in the “Registro de Pacientes de Enfermedades Raras” (Registry of Patients with Rare Diseases) of the IIER – https://registroraras.isciii.es//. Patients should provide all the clinical information available showing all studies done up to that moment and clinical reports reflecting the current clinical situation of the patient (http://spainudp.isciii.es/information/)

Other requirements necessary for a patient to be included in the Spanish Undiagnosed Disease Cases Program –SpainUDP:

  • The combined clinical manifestations of the patient are not attributable to any common disease or to a known Rare Disease
  • The case has been extensively studied by other medical professionals without being able to reach a definitive diagnosis
  • The patient or his/her legal guardian has given express informed consent for the participation in the program
There are different routes to apply to Access the Program:
  • Be referred by a medical specialist from one of the hospitals collaborating with the program or
  • Be referred by a medical specialist from one of the hospitals belonging to the National Health Services, who should accept to collaborate with the SpainUDP program with regard to the diagnosis of their patient
       


 

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