BOX 6-5
Model Patient Registries

The Center for International Blood and Marrow Transplant Research administers a database of clinical information on recipients of blood and bone marrow transplants that includes data on patients throughout the treatment process, beginning with the time of diagnosis and continuing through all subsequent phases: the time of administration of chemotherapy, the phase of decision making to perform a transplant, the time that the patient receives high-dose myeloablative therapy, the time that the patient is reinfused with stem cells, the immediate posttransplantation period, the complications that occur immediately posttransplantation, and eventually, the posttransplantation outcomes, such as disease remission. As is the case for spinal cord injury clinical trials, relatively few patients are eligible for clinical trials of bone marrow transplants. In addition to collecting data from an international network of transplant centers, the registry facilitates multicenter collaborations among the researchers and clinicians at those centers. They disseminate information to physicians, patients, researchers in other fields, and the general public. University researchers and pharmaceutical companies also use the data in the database as control groups, although they are charged for use of the data. In addition, the registry has a contract with the National Marrow Donor Program to oversee patient advocacy.

The Consortium of Multiple Sclerosis Centers established The North American Research Consortium on Multiple Sclerosis (NARCOMS): Multiple Sclerosis Patient Registry in 1993 to speed the development of new therapies and health care services by facilitating research on multiple sclerosis and reducing the time and cost of research studies. The registry is a database consisting of functional, accessible information that investigators use to develop research strategies and survey issues related to multiple sclerosis. As of June 2004, the number of registry participants reached more than 24,000. Online enrollment has recently become available for this registry. The availability of the website has made it easier and faster for participants to enroll. The goal of the registry is to develop a computerized database with 35,000 participants who will be monitored over time by the use of semiannual updates.

In 1973 the National Cancer Institute initiated the Surveillance, Epidemiology, and End Results (SEER) Program, which currently collects and publishes cancer incidence and survival data from 14 population-based cancer registries. Included in the SEER database is information on more than 3 million cancer cases, and approximately 170,000 new cases are added each year. Since the inception of the SEER Program quality control has been an integral part of the effort and the quality and completeness of the data is evaluated each year. A valuable innovation in the SEER registry is that it provides web-based access to registry data and analytic tools that can be used by both researchers and policy makers.

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