Information about the study

Information for patients and families  

The aim of iNTD study is to record and evaluate the diagnostic procedures required to make the final diagnosis, the therapy that is currently being given, and the course of the disorders. The results of the study shall be used to give physicians a better understanding of the progression of the disorder, of the clinical symptoms, of the incidence of complications, and of the impact that the disorder makes on the quality of life of the patients and their families. In addition, we shall also assess the clinical course and the prognosis of the disorders over the long term.  
The study is based on routine examinations that are as a rule carried out during outpatient appointments and stays at the clinic and shall not involve an extra investment of time on your part. In the course of this study, we shall record data on the progression of your disorder, the treatment, the changes in laboratory values measured in the blood, the cranial nerve liquor, and the urine, the results of technical investigations, and those of developmental tests. These data shall be collected in a central patient register. Wherever magnetic-resonance tomography investigations are carried out, the results shall also be recorded in the register.

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