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Welcome

To The Indian Transplant Registry

LOGIN
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Introduction

  • Registry – important role in evaluating LT practice and outcome 
  • Real world data
  • Can give immediate and long term picture 
  • Effectiveness contingent of quality and completeness of data
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Advantages

  • Capture of data on line
  • Queries & corrections
  • Statistics (pre-programed + personalized)
  • PP presentation and website figures
  • Audit trail traceability of all data modification

Key features of ILTR

  • Ease of use
  • Security
  • Anonymity of data
  • Reliability and equity of access
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Goals- 10 year cycle

  • Capture data for  recipient and donor characteristics at various intervals in the life cycle of a transplant recipient and living donor :
  • Listing time
  • Transplant time
  • Post-operative
  • Discharge time
  • First year quarterly follow-up
  • Rest 9 years annual follow-up
  • Capture immunosuppression regimen, complications and patient reported outcomes
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Input components

  • Application server and database
  • Web app for application administration
  • Web app for recipient/donor data entry
  • Mobile app iOS (iPhone and iPad) data entry and data analytics
  • Mobile app Android devices data entry and data analytics
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Output components

  • Web services for data selection/filtering and querying the registry database
  • Reports and visual dashboards generation and distribution
  • Infrastructure components – user management, session management, audit logs, e-mail component, mobile notification, reminder service, scheduled backup and archival
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Levels of engagement – ILTR Lite

  • Focus on data gathering with elementary reports/data access
  • All centers
  • Basic data – demographics, type of LT, outcome
  • Ideally all users
  • Access to basic demographic and other data published by ILTR
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Full ILTR sign on

  • MOU with centers -agreements to exchange data and cross-check common data
  • ? Annual contribution
  • The ILTR data will be available to members who’s center is regularly contributing complete data to the ILTR. 
  • Participating centers will be cited in every publication from the registry
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Input and output

  • Data entry screens are simple to start with
  • Need to be designed for extensibility to allow for changes in specific data points as the registry matures over time
  • Data display screens will be fairly complex
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Process

  • Single-page legal disclaimer by all centers ( being vetted)
  • The hospital is the repository /owner of data
  • One authorised user and password ( linked to email)
  • If movement between centers- please communicate to LTSI in writing/mail to transfer data guardianship

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Security

  • Each transplant center – single registration
  • One registered username and password for data entry
  • Entry prompt
  • Request new patient ID
  • Query generates a random UHID- not linked to entry place or center

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Data capture

  • Patient details
  • Pre LT tests
  • HCC
  • Donor aspects- Living/deceased
  • LT aspects
  • Post LT complications
  • Immunosuppression
  • Follow up data

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UHID

  • UHID only connect to main ILTR database
  • Demographics cant be changed – all other edits will be logged
  • Major changes will require an email to ILTR
  • User can access statistics of their own center

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Quality

  • Each center will recieve an email monthly about quality of data entered – completeness , gaps
  • Center will have 2 weeks to modify/rectify
  • If data completion less than 75% for more than 3 months / after 3 reminders- center may get an audit visit
  • Ongoing poor data quality may revoke centers ‘good standing’
  • 6 monthly data audit by ILTR and report published on website

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Results published by ILTR

  • 6 monthly basis 
  • Available to all LTSI members – posted on website 
  • Templates 
    • Month on month transplant activity 
    • Deceased/living 
    • Donor demographics 
    • Pediatric LT 
    • Outcomes 

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Regulations for data use

  • Data are available to ILTR member centers who’s center is regularly contributing data and in ‘good standing’.
  • Written request for data use. The request should contain
    • Title and description of the study
    • Specification of the data that should be obtained from the ELTR
    • Supporting letter by the program director
    • Names and affiliations of the investigators (max. 3)
    • A disclosure statement regarding potential conflicts of interest
    • Clearance from local/hospital IRB

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Process cycle

Contact Us