Results: Both networks started recruitment of patients by the end of 2015. Inclusion/exclusion criteria follow the 2017 Movement Disorder Society criteria for the clinical diagnosis of progressive supranuclear palsy. Both networks host a web-based data registry and a central biorepository. Both networks follow the same core protocol for patient recruitment and collection of data, imaging and biomaterials. The ProPSP network is organized by the German Parkinson and Movement Disorders Society. The DescribePSP network is directly linked to other Describe cohorts with other primary diagnoses of the neurodegenerative and vascular disease spectrums and also to an autopsy program for clinico-pathological correlation. DescribePSP is embedded in a larger network with parallel cohorts of other neurodegenerative diseases and healthy controls.
Methods: The DescribePSP network is organized by the German Center for Neurodegenerative Diseases.
Clinical research into treatment strategies has been limited due to delay in clinical diagnosis and lack of natural history data on distinct clinical phenotypes. Since now, prospective natural history data are largely lacking. Progressive supranuclear palsy is a rare, adult-onset, neurodegenerative disease with striking clinical heterogeneity.
0 kommentar(er)
