UNOS DonateLife

June 30, 2005

UNOS to develop heart device registry and Web site for NIH supported Interagency Registry of Mechanical Circulatory Support Devices

Richmond, VA -- The United Network for Organ Sharing (UNOS), primarily known for maintaining the nation's waiting list for organ transplants and matching organs with potential transplant recipients, today announced two new contracts. UNOS will build a Web-based information resource and a registry to track patients receiving certain types of heart devices.

"Providing services for other transplant-related organizations is a natural outgrowth of the highly-specialized services we provide in operating the nation's transplant system. Our staff has developed unparalleled technical experience and resources," said UNOS Executive Director Walter Graham.

UNOS brings over 10 years of experience in Web site design, content management, and handling data and has been recognized for accomplishments in information technology, medicine, and science by Computerworld Smithsonian, The Annenberg Public Policy Center and Federal Computer Week.

Registry to collect data on therapy for heart failure

The National Institutes of Health (NIH) has awarded the University of Alabama at Birmingham the contract for the development of the Interagency Registry of Mechanical Circulatory Support for End-Stage Heart Failure program. The program will establish a data and clinical coordinating center to manage a registry of patients receiving a mechanical circulatory support device to treat heart failure. As a subcontractor of the University of Alabama, UNOS will collect clinical and laboratory data from 50-70 participating hospitals in the United States, on patients receiving MCSDs as destination therapy for end-stage heart failure. The registry will collect data from approximately 2,000 new patients annually over a period of five years.

Approximately 550,000 people in the U.S. are newly diagnosed each year with heart failure. It is estimated that heart failure is the leading or contributory cause in 300,000 deaths each year. For many of these patients a reliable, effective method of mechanical circulatory support--either as a bridge to transplant or as destination therapy--would be a viable alternative or adjunctive therapy. By collecting data and reporting on patient characteristics, indications, implantation procedures, and adverse events as identified by Interagency Registry of Mechanical Circulatory Support for End-Stage Heart Failure program, the MCSD Registry will be able to improve clinical evaluation and patient management and help bring about new advancements in device development.

This project is funded in whole or in part with Federal funds from the National Heart, Lung, and Blood Institute, National Institutes of Health, Department of Health and Human Services, under Contract No. N01-HV-58198. The total contract, $6,338,903 over five years, will be financed 100 percent by Federal money.

About UNOS

A private, nonprofit organization, UNOS manages the nation's organ transplant system and oversees the world's most comprehensive database of clinical transplant information under contract with the federal government. UNOS operates the 24-hour computerized organ sharing system, matching donated organs to patients registered on the national organ transplant waiting list. UNOS seeks to increase organ donation through education and improve transplant success rates through outcomes-based research and policymaking. Transplant scientists and health officials recognize UNOS-developed technology applications as the international model for organ sharing.

UNOS also provides secure data management and statistical analysis for healthcare providers, pharmaceutical companies and others in the medical and biotechnology fields. The organization designs and implements custom information sharing systems for medical data, tailored to individual research strategies. UNOS delivers solutions for market research, new product development, performance benchmarking and post-market surveillance, including business analysis, data collection, data warehousing, provider management, statistical analysis, registry development and maintenance, help desk support and training, and Web site development.