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@ARTICLE{Respondek:157718,
      author       = {Respondek, Gesine and Höglinger, Günter},
      title        = {{D}escribe{PSP} and {P}ro{PSP}: {G}erman {M}ulticenter
                      {N}etworks for {S}tandardized {P}rospective {C}ollection of
                      {C}linical {D}ata, {I}maging {D}ata, and {B}iomaterials of
                      {P}atients {W}ith {P}rogressive {S}upranuclear {P}alsy.},
      journal      = {Frontiers in neurology},
      volume       = {12},
      issn         = {1664-2295},
      address      = {Lausanne},
      publisher    = {Frontiers Research Foundation},
      reportid     = {DZNE-2021-01175},
      pages        = {644064},
      year         = {2021},
      abstract     = {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.},
      keywords     = {biobank (Other) / corticobasal syndrome (Other) / disease
                      networks (Other) / natural history (Other) / progressive
                      supranuclear palsy (Other) / rare neurological disease
                      (Other)},
      cin          = {Clinical Research (Munich)},
      ddc          = {610},
      cid          = {I:(DE-2719)1111015},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      experiment   = {EXP:(DE-2719)DESCRIBE-PSP-20160101},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:34113306},
      pmc          = {pmc:PMC8186498},
      doi          = {10.3389/fneur.2021.644064},
      url          = {https://pub.dzne.de/record/157718},
}