Scientific Registry of the International Society for Heart and Lung Transplantation: Introduction to the 2005 Annual Reports

New data analysis types 

In addition to our usual analyses, there are several new features in this year’s Registry reports. First, we have expanded the analyses of the use of newer immunosuppressive drugs and drug combinations. In addition, we have included analyses of the influence of induction and maintenance immunosuppressive drugs and combinations on the incidence of acute rejection and survival after transplantation. Finally, we have constructed hypothetical clinical scenarios that graphically illustrate the influence of various clinical parameters on heart and lung transplant outcomes.

Simplified reporting of “Tier 1” data 

As promised in the Introduction to last year’s Registry reports, we have now implemented a simplified, online “Tier 1” data entry process, which requires only 14 data elements to register a patient, and only 3 data elements to complete the annual update for a patient. A new transplant case can be registered in as little as 2 minutes! By providing this less labor-intensive pathway for data reporting, we hope to improve the Registry’s ability to reflect the total number of transplants performed worldwide. Of course, all transplant centers wishing to submit all of the data currently collected by the Registry (now referred to as “Tier 2” data) will continue to be able to do so. Tier II data expand the patient profile to include pre-transplant, transplant and discharge information on the recipient as well as data on the organ donor.

Access to Registry data 

There are many ways to access the Registry data (Table 1). As in past years, all data figures and tables included in the Registry reports are also available for viewing and downloading on the ISHLT website (www.ishlt.org/registries) in Microsoft PowerPoint format. The website also contains many additional data slides that are not included in the published reports. In addition, those wishing to view the published Heart, Lung and Heart-Lung, Pediatric and MCSD reports online may do so by contacting www.jhltonline.org.

Table 1. Methods for On-line Access of ISHLT Registry Data

	1. Registry slide set
	• Available to all in Microsoft PowerPoint format (www.ishlt.org/registries)
	2. Registry manucripts
	• Available at www.jhltonline.org
	3. Online continent-specific reports
	• Available to all at ISHLT website (www.ishlt.org)
	4. Online center-specific reports
	• Available at secure section of ISHLT website (www.ishlt.org)
	• Available to all actively participating centers
	• Requires user name and password: contact Kathryn Philibin (philibka@unos.org) for information

In addition to the information available in the published Registry reports and slide sets, continent- and center-specific data reports can be obtained from the secure section of the ISHLT website (www.ishlt.org). These include: transplant counts; tabulations of recipient, transplant and donor demographics; and survival rates stratified by demographic parameters. Continent-specific reports are available to everyone and allow comparison of continent-specific transplant and outcome data with those of all transplants submitted to the Registry. Center-specific reports allow comparison of one’s own individual center with that of all transplants submitted to the Registry. These reports are available to all actively participating centers, including those submitting data via organ-exchange organizations. Because we only want staff members affiliated with each center to access center-specific reports from their own center, center-specific reports require a user name and password, which can be obtained from Kathryn Philibin (philibka@unos.org).

Requests for additional data and data analyses 

ISHLT members and non-members frequently request Registry data that are not readily available in the slide set or in the continent- or center-specific reports. To facilitate and expedite these data queries, we have developed a uniform process by which they are handled. All requests are first submitted to the ISHLT headquarters office, accompanied by a data request form (available at www.ishlt.org). ISHLT staff will determine the number of hours each request will require, allowing each request to be assigned to a specific level (Table 2). For approved data requests, ISHLT members may be granted a specific number of hours of data analysis and biostatistical support for publication of new information regarding heart and lung transplantation.

Table 2. Summary of the 3 levels of Registry Data Request

		Analysis time required	Usual turnaround time	Requirements
	Level 1: Simple inquiries/clarification	<1hour	<14days	Available to all
	Level 2: New analyses of existing data	<5hours	4to6weeks	ISHLT members only
	Level 3: Complex analyses of existing data/new data collection	>5hours	Variable	ISHLT members only; reviewed by Executive Committee (Feb., June, Oct.)