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PSC Research Network

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Title: PSC Research Network Last modified by: Christopher Bowlus Document presentation format: Custom Other titles: Gill Sans ProN W3 Arial Calibri ... – PowerPoint PPT presentation

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Title: PSC Research Network


1
PSC Research Network
  • A Collaborative Application with Google Health

2
Barriers to PSC Database
  • Most patient databases are University Hospital
    based
  • Limited access outside of urban areas
  • Limited number of PSC Research Centers
  • Requires referral from community providers

3
Internet-based Patient-Centered Database
  • Pros
  • Accessible to patients regardless of location
  • Optimize linkage between patients and researchers
  • Inexpensive
  • Cons
  • Accuracy/Completeness of patient-entered data
  • Acceptance by patients
  • Privacy/Security/Administration of Data

4
PSC-RN - Purpose and Goals
  • Purpose To establish a robust collaborative
    community for PSC researchers and patients, using
    Google Health and Google Apps Engine to build new
    applications software
  • Goals
  • To discover definitive factors in a researcher
    patient collaborative community
  • Identify necessary services for patients to
    participate in the research process (trial
    design, recruitment, participation, monitoring)
  • To characterize the most productive interactive
    services between patients during the research
    process

T. Hill, PSC - Google Project, Jan. 2010
5
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6
PSC-RN
  • Patients
  • Demographics, specific symptoms, history, tests
    results
  • Upload scanned files
  • Notification of clinical trials (via
    ClinicalTrials.gov)
  • Researchers
  • Search aggregate data
  • Download de-identified data
  • Administrator

7
Project Status
  • Proposal approved by the TIDES Foundation Grant
    Awards Panel Dec. 2009
  • During 1st Half of 2010, needs requirement
    specification written.
  • Design specification completed and programming
    started June 2010.
  • Prototype by Oct 31st of this year.
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