Longitudinal Oncology Registry of Head and Neck Carcinoma (LORHAN), a new national cancer registry

Abstract

5583 Background: Registries can be invaluable for describing patterns of care for a population of patients (pts). Most cancer registries, however, do not possess sufficient breadth or depth to provide a complete and reliable picture of clinical practice. We report the launch of LORHAN, a new national registry of head and neck carcinoma (HNC) pts. LORHAN is designed to extend current cancer registries by providing detailed data on radiation and/or cancer drugs delivered to HNC pts in all practice settings. Methods: This is a prospective, multi-center, longitudinal, observational registry. Pts with newly diagnosed HNC, scheduled to receive radiotherapy or drug therapy, ≥18 years of age and providing written informed consent are being enrolled. Patients participating in clinical trials are eligible for LORHAN. The primary objective of the registry is to describe, in detail, patterns of care for HNC pts. The secondary objectives are to document outcome by treatment regimen, determine the incidence and severity of major toxicities and to identify supportive care received for managing treatment-related complications. Pts are entered in the registry from the time of initial diagnosis and are followed for at least 2 years and up to 10 years. Detailed information on initial treatment and re-treatment is collected. Data entry is electronic and incorporates encrypted point-to-point data transfer via secure HTTP protocols. Physician and patient confidentiality are strictly maintained. Participating practitioners can review and compare their data on a real-time basis to the database. Registry pts may be linked to the NDI to minimize lost to follow-up. Analyses of data are primarily descriptive. Results: LORHAN was launched in Oct. 2005, and as of Dec., 7 sites have received IRB approval and 3 pts have been enrolled. Of the 7 sites, 1 is an academic site and the remaining are community-based practices. An additional 21 sites (17 academic, 4 community) are at various stages of participation. More than 100 medical oncologists and radiation oncologists are anticipated to participate and approximately 26,000 pts will be eligible each year. Accrual status will be updated. Conclusions: LORHAN is a new national initiative that may further the understanding of the care of HNC pts across practice settings. [Table: see text]