title: Development, analysis, refinement, and utility of an interdisciplinary amyotrophic lateral sclerosis database.
abstract: The current status of evaluation and management provided by individual healthcare professionals (HCP) at amyotrophic lateral sclerosis (ALS) centers and clinics needs to be analyzed. This paper describes one ALS center's experiences with the development, analysis, refinement, and utility of an interdisciplinary, HCP-driven ALS database. The purpose and conceptual framework of the database, the general data that needed to be collected, and the types of reports that needed to be generated were determined, and, in collaboration with a computer programmer, data entry and database management systems were developed. Data were collected on 234 patients between September 1996 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 system included: systematization of data collection and reporting, reduction of redundant data collection by individuals, decreased variability of evaluation methods and management decisions from patient to patient, and increased availability of a variety of uniform patient information to assist team members in making care decisions. Ongoing refinement will ensure that this HCP-driven ALS database continues to be informative, practical and effective for decision-making and enhancing delivery of care.
authors.affiliation: Department of Neurology, The Cleveland Clinic Foundation, OH 44195, USA. v.dalbello-haas@csuohio.edu
authors.forename: V
authors.initials: V
authors.lastname: Dal Bello-Haas
authors.forename: D
authors.initials: D
authors.lastname: Andrews-Hinders
authors.forename: C B
authors.initials: CB
authors.lastname: Richer
authors.forename: C
authors.initials: C
authors.lastname: Blakely-Adams
authors.forename: J
authors.initials: J
authors.lastname: Hanson
authors.forename: J
authors.initials: J
authors.lastname: Hammel
authors.forename: D
authors.initials: D
authors.lastname: Kelly
authors.forename: A
authors.initials: A
authors.lastname: Kloos
authors.forename: E P
authors.initials: EP
authors.lastname: Pioro
authors.forename: R D
authors.initials: RD
authors.lastname: Powazki
authors.forename: T
authors.initials: T
authors.lastname: Wheeler
authors.forename: H
authors.initials: H
authors.lastname: Mitsumoto
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003625:Data Collection; D003628:Database Management Systems; D019992:Databases as Topic; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000175:diagnosis / Q000628:therapy*; D010348:Patient Care Team; D012984:Software