Observational studies on the course of progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD)

For a better understanding of progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD), we have been coordinating two large, multicenter observational studies in Germany since 2015: ProPSP(https://www.parkinson-gesellschaft.de/images/PDF/Flyer_ProPSP.pdf) and DESCRIBE-PSP(https://www.dzne.de/fileadmin/Dateien/editors/documents/Klinische_Forschung/Flyer/Flyer_DZNE_KlinischeForschung_PSP.pdf). As part of both studies, detailed clinical data and biomaterials are collected longitudinally. The studies provide valuable insights into the course of the disease and the pathophysiology of PSP and CBD. For further information, please contact the Movement Disorder Working Group at 0176-15324944.

Development and validation of clinical scales for patients with progressive supranuclear palsy (PSP)

Together with the international Movement Disorder Society, we have developed the Progressive Supranuclear Palsy - Clinical Deficits Scale (PSP-CDS) to classify patients with PSP in terms of their limitations in everyday life, across the whole spectrum of PSP phenotypes (Piot et al., Mov Disord. 2020;35:650-661). The PSP-CDS is a reliable scale for clinical follow-up, e.g. in the context of therapy studies. We are currently developing a German translation of the PSP-CDS.

Revision of the clinical diagnostic criteria for progressive supranuclear palsy (PSP)

Under the leadership of Prof. Höglinger, the diagnostic criteria for progressive supranuclear palsy (PSP) were revised in 2017 with a team of international experts under the umbrella of the Movement Disorder Society based on evidence and consensus (Höglinger et al., Mov Disord. 2017;32:853-864). They enable an earlier and more sensitive clinical diagnosis (Ali et al., Mov Disord. 2019;34:1144-1153; Gazzina et al., bioRxiv 2019 https://www.biorxiv.org/content/10.1101/520510v1; Grimm et al., Clinical conditions "suggestive of progressive supranuclear palsy" - diagnostic performance, under review), and are therefore also a fundamental milestone in the development of new treatment strategies for PSP. A prospective validation of the diagnostic criteria is currently being carried out as part of the multicenter observational studies on PSP and CBD.

Hannover TrajectoryCohort- Parkinsonism: HATCH-P

The aim of this prospective longitudinal observational study is to recruit 100 to 200 patients with early Parkinson's syndrome. Patients will be included in the first year after manifestation of motor symptoms and followed up longitudinally for 12 months. Blood components (serum, plasma, PBMC), cerebrospinal fluid, saliva and genetic data (DNA, RNA) will be collected from the patients. In addition, patients will be characterized with the usual clinical scales to define the symptom burden. Imaging data from clinical care (MRI and nuclear medicine diagnostics, e.g. FDG-PET) will be included in the study if available.

Medical staff: Stephan Greten, Johanne Heine, Meret Huber, Martin Klietz, Lea Krey, Lars Müschen, Sophia Rogozinski, Florian Wegner

Study Nurse: Rabea Gatzke