Development, analysis, refinement, and utility of an interdisciplinary amyotrophic lateral sclerosis database

The current status of evaluation and management provided by individual heal thcare professionals (HCP) at amyotrophic lateral sclerosis (ALS) centers a nd clinics needs to be analyzed. This paper describes one ALS center's expe riences with the development, analysis, refinement, and utility of an inter disciplinary, HCP-driven ALS database. The purpose and conceptual framework of the database, the general data that needed to be collected, and the typ es of reports that needed to be generated were determined, and, in collabor ation with a computer programmer, data entry and database management system s were developed. Data were collected on 234 patients between September 199 6 and August 1998, and were analyzed by a biostatistician. Based on review of the biostatistician's report and discussion of problems encountered with the systems, the database was then refined, Benefits of the database syste m included: systematization of data collection and reporting, reduction of redundant data collection by individuals, decreased variability of evaluati on methods and management decisions from patient to patient, and increased availability of a variety of uniform patient information to assist team mem bers in making care decisions. Ongoing refinement will ensure that this HCP -driven ALS database continues to be informative, practical and effective f or decision-making and enhancing delivery of care.