International Surgical Patient Outcome Registry

Challenge
Solution
Result

Challenge

The ISHLT International Registry for Heart and Lung Transplantation was created for the purpose of providing on-going, current information on the worldwide thoracic organ transplantation experience. They needed a highly-secure, centralized, efficient, consistent means for collecting, analyzing and sharing data from a variety of data sources world wide.

Solution

This registry is the only one of its kind. Every country performing a minimum specified level of heart/heart-lung/lung transplantation is invited to submit data to the Registry. The collected data is made available to ISHLT members and the public via online quarterly data reports and via annual data slides, available for download from the ISHLT Web site as a PowerPoint file. Additionally, members may submit queries to the Registry to obtain specific data sets or data analyses needed for a research project or manuscript.

Specifically, Tii

  • Helped develop the study protocol
  • Developed an adverse event reporting protocol
  • Developed site training programs
  • Developed all legal agreements
  • Developed participant registry software, documentation, training materials and Web site
  • Managed the central database
  • Distributed confidential electronic quarterly reports to the ISHLT
  • Maintained and hosts the project's Web site
  • Provided research data that can be presented to the medical community
  • Provided customer and marketing support
  • Insured the confidentiality of facility and patient data

The Annual ISHLT Registry Report includes survival data, risk factor data and other outcome data in heart/heart-lung/lung transplantation for a variety of demographic criteria, including age, status at transplantation, NYHA class at transplantation, and indication for transplantation. This report is published annually in the Journal of Heart and Lung Transplantation.

Result

The ISHLT Registry Executive Committee facilitates the collection of appropriate information, interfaces with governmental agencies and international transplant networks, and works to enhance compliance with data collection.

ISHLT collects data for the registry through three mechanisms:

  • manual data entry by individual centers via our Web-based data entry system
  • electronic download of data from individual centers into the database
  • via a data sharing arrangement with a regional/national Organ Procurement Organization or Organ Exchange Organization

At present, approximately 10 centers submit data via paper forms, which are being phased out; 19 centers submit data via manual data entry using our Web-based data entry system; approximately 52 centers submit data via electronic download from their database to the ISHLT registry; and we have data sharing arrangements with the following Organ exchange Organizations, who provide us with the data for all of their participating institutions:

  • United Network for Organ Sharing (United States of America)
  • Eurotransplant (Austria, Belgium, Germany, Luxembourg, The Netherlands, Slovenia)
  • UK Transplant (United Kingdom, Ireland)
  • Scandia Transplant (Sweden, Norway, Denmark, Finland)
  • Australia and New Zealand Cardiothoracic Organ Transplant Registry