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Background:  The German research networks  DescribePSP  and  ProPSP  prospectively collect comprehensive clinical data, imaging data and biomaterials of patients with a clinical diagnosis of progressive supranuclear palsy. Progressive supranuclear palsy is a rare, adult-onset, neurodegenerative disease with striking clinical heterogeneity. Since now, prospective natural history data are largely lacking. Clinical research into treatment strategies has been limited due to delay in clinical diagnosis and lack of natural history data on distinct clinical phenotypes.   Methods:  The  DescribePSP  network is organized by the German Center for Neurodegenerative Diseases.  DescribePSP  is embedded in a larger network with parallel cohorts of other neurodegenerative diseases and healthy controls. 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. The  ProPSP  network is organized by the German Parkinson and Movement Disorders Society. Both networks follow the same core protocol for patient recruitment and collection of data, imaging and biomaterials. Both networks host a web-based data registry and a central biorepository. Inclusion/exclusion criteria follow the 2017 Movement Disorder Society criteria for the clinical diagnosis of progressive supranuclear palsy.   Results:  Both networks started recruitment of patients by the end of 2015. As of November 2020,  N  = 354 and 269 patients were recruited into the  DescribePSP  and the  ProPSP  studies, respectively, and  N  = 131 and 87 patients received at least one follow-up visit.   Conclusions:  The  DescribePSP  and  ProPSP  networks are ideal resources for comprehensive natural history data of PSP, including imaging data and biological samples. In contrast to previous natural history studies,  DescribePSP  and  ProPSP  include not only patients with Richardson's syndrome, but also variant PSP phenotypes as well as patients at very early disease stages, before a diagnosis of possible or probable PSP can be made. This will allow for identification and evaluation of early biomarkers for diagnosis, prognosis, and progression.

frontiers in neurology

DescribePSP and ProPSP: German Multicenter Networks for Standardized Prospective Collection of Clinical Data, Imaging Data, and Biomaterials of Patients With Progressive Supranuclear Palsy