Psychosocial registry for persons with cancer: a method of facilitating quality of life and symptom research.

Research focused on the psychosocial aspects of the experience of persons with cancer and their family caregivers is hampered by the methodological challenges inherent in quality of life research. A data registry offers a potential solution to many of these problems in providing a large, comprehensive database, using standardized instruments. We report here our preliminary experience with establishing a Psychosocial Registry designed to advance research in the psychological, social, and spiritual aspects of quality of life of newly diagnosed cancer patients and their family caregivers. The first six months of enrollment demonstrated that the majority of newly diagnosed patients approached for consent (68%) and their primary family caregiver (92%) were willing to participate in the registry; of these, 80% also agreed to be contacted in the future for additional studies. Face-to-face interview was the preferred method of data collection. Our preliminary experience suggests that continuation of the registry with the current modest level of resources would generate a sample of approximately 1000 patients in three years. The long-range goal is to establish a national psychosocial data registry that will enroll patients at diagnosis and follow them through the entire cancer experience, including end of life or survivorship. Copyright (c) 2006 John Wiley & Sons, Ltd.