ISHLT INTERNATIONAL REGISTRY FOR HEART AND LUNG TRANSPLANTATION
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. Our 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. Such requests can be made using the ISHLT Data Request Form
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.
The ISHLT International Thoracic Transplant Registry Steering 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, 45 centers submit data via manual data entry using our web-based data entry system; and we have data sharing agreements with the following Data Collectives, who provide us with the data for 345 participating institutions:
A list of institutions currently submitting data to the Registry is included as an appendix to the Registry Slides, available for download from this web site. If your institution does not currently submit data to the Registry and you are interested in doing so, please complete the following forms:
- ISHLT Transplant Registry Database Institutional Enrollment Form - each center that wishes to begin individual reporting to the database, whether via manual data entry or electronic download, must complete this form in order to receive a provider number. Institutions whose data is provided to our registry via a data sharing agreement with the OEO should NOT submit paperwork to initiate individual institution data submission.
- ISHLT Transplant Registry Data Sharing Agreement - each center that wishes to begin individual reporting to the database must submit a signed version of this ISHLT Transplant Registry Data Sharing Agreement.
- ISHLT Transplant Registry Electronic Data Submission Access Form - centers that desire to submit data via manual data entry on the web-based data collection system must complete a separate form for each staff member who is to receive access to the database. NOTE: individuals cannot share user names and passwords. Each individual must have his/her own user name and password.
- Institutions that wish to arrange for regular electronic download of data into the ISHLT database should contact the ISHLT Phone Center at firstname.lastname@example.org at Transplant Informatics Institute/United Network for Organ Sharing to receive details regarding software specifications, file format, etc.
- If you would like to have ISHLT enter into a data sharing arrangement with your OEO, please contact Amanda Rowe at email@example.com and provide the contact information for your OEO.
- For those institutions and individuals who are interested in submitting data to the ISHLT Registry, and for those researchers who wish to conduct analyses of the Registry data or query the data base, the below Excel File links provide access to the lists of data fields that the Registry currently collects. Please review these fields prior to submitting a Registry Data Request Form.
Questions about the registry and the data submission process may be directed via firstname.lastname@example.org
at the United Network for Organ Sharing which has been contracted to manage the ISHLT Registry.