The Inspector General of the U.S. Department of Health and Human Services reports that the contribution organ donor registries can make to increasing the number of donors appears "limited," and cautions states to "avoid over-promising" on what registries can do to increase the supply of organs for the 80,000 Americans awaiting a transplant.

The IG's office said the growing number of registries being set up by states and organ procurement organizations (OPOs) could "offer numerous advantages compared to traditional methods for increasing donations," but added that thus far their "measurable impact on increasing the number of organ donors has been marginal."

The Inspector General, in response to a request from HHS Secretary Tommy Thompson, took a look at the donor registries being operated by 14 states and two OPOs in other states. Six other states have recently passed laws establishing registries, although in two states they have not received start-up funding.

The IG reported that its analysis of data showed that "families of registry enrollees give consent for donation at a much higher rate than do families of non-enrollees."

But, the report said, only about one quarter of the population in states with registries has actually enrolled, and enrollees constitute "a relatively small portion of all donors" at the OPOs in those states.

"Even those registries in place for many years contain a minority of the state's population," the report said.

The IG also noted that while one of the attractions of establishing registries was the idea that they could more easily provide information about out-of-state potential donors, "the number of such donors is small."

The report concluded that the most useful role that DHHS could play would be to (1) act as a clearing house to support information sharing among registries, and provide technical assistance; and (2) support research projects to see "what more can be done to tap registries' potential."

The Association of Organ Procurement Organizations (AOPO), which represents all 59 of the nation's OPOs, said it felt the report "possibly understates the potential future value of registries.

"AOPO believes that it is too soon in the evolution of registries in states to make a deterimination that they are not effective," said AOPO Executive Director Paul Schwab. "This is particularly the case if registries are increasingly considered as documentation of consent rather than simply as declaration of intent."

Other sources: DHHS, AOPO