PSC Research Network

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PSC Research Network

• A Collaborative Application with Google Health

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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

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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
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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

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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.