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Progressive Supranuclear palsy (PSP) disease progression, management, and healthcare resource utilization: a retrospective observational study in the US and Canada.

Ella NysetvoldLauren N LopezAshley N LeekHenrik FrykNelson D PaceSara Snell TaylorJoyce RhodenCaitlin A NicholsDemetris PillasAlexander KleinTeresa GasallaAnna Scowcroft
Published in: Orphanet journal of rare diseases (2024)
This retrospective study adds to the current understanding of PSP symptoms, comorbidities, and healthcare resource utilization (HRU) across the disease journey. By involving individuals with PSP and their caregivers or legally authorized representatives in the research process, this study was unique in its approach to participant recruitment and enabled individuals to participate in research without the need for travel. We collected medical documents from multiple healthcare centers, allowing for broad data collection covering the entire disease journey. This approach to the collection of real-world data may be used to generate valuable insights into many aspects of disease progression and management in PSP and many other rare diseases.
Keyphrases
  • healthcare
  • electronic health record
  • multiple sclerosis
  • big data
  • palliative care
  • machine learning
  • health information
  • physical activity