MS COSTAR: A Computerized Record for Use in Clinical Research in Multiple Sclerosis

Abstract

Mall, Vancouver, B.C., Canada V6T 2B5.MS COSTAR is an integrated computer software system, written in the MUMPS computer language, and is designed to facilitate both clinical care and clinical research in the setting of an MS clinic (1). It provides functions for storing, retrieving, analyzing, and displaying the demographic, clinical, and test data that accrue as patients are seen and cared for over time in a typical MS clinic. MS COSTAR is a specialized derivative of the COSTAR (COmputer STored Ambulatory Record) (2) and was implemented for MS Clinic use in 1980 at the University of British Columbia (UBC). It has now been adopted as the standard clinical record keeping system and database for multiple sclerosis (MS) clinical research centers in both Canada and the United States (US).Cardinal features of the MS COSTAR system include a natural time base, comprehensive encoding and quantitation of clinical and test data for precise retrieval and analysis, and a broadly compatible format designed to facilitate data exchange and pooling among MS COSTAR and -other databases such as the European EDMUS system (3).There are currently twenty-three installations around the world, eight Canadian, one Japanese, one European, and thirteen in the United States. Seventeen of the sites are actively inputting data. Under a recent formal agreement, data are currently being pooled among all North American sites, creating a database of approximately 16,000 patients, which is standardized with respect to all clinical, laboratory, and imaging data.The system software is regularly updated to keep it current with advances in hardware and software, as well as to respond to user requests for enhancements and, particularly, for new codes needed to describe evolving diagnostic, therapeutic, and evaluation concepts in MS. The current release includes many new codes, reflecting new MS conr-epts, a variety of report forms, and several standard searches or queries that can be modified for local use. Also included are sample queries with output to Harvard Graphics tom and Microsoft ExcelT&dquo;' spreadsheet for data manipulation. The next release (under development) features enhanced full-screen &dquo;Windows&dquo;&dquo;' type access to many functions and full-screen data input for core clinical data.This version will be beta tested in 1994.Although it is a highly sophisticated and complex system when fully implemented, the initial use of the system for basic registration and input of clinical data is quite simple. New user centers are encouraged to first master basic use of the system on a modest (50-100) patient cohort in order to become familiar with the system. This will then provide a basis to select those features and capabilities that will best serve the needs of the individual center. Only after local information handling needs are met should there be any consideration of participating in optional multi-site data pooling. RationaleTo meet the patient care and research information needs of the MS clinic, which opened at UBC in 1980, a st...

Early onset multiple sclerosis

“…This study and other childhood MS studies showed the female preponderance among EOMS (female/male ratio ϭ 2.87:1) when compared to adults. 22,26 In our study, the female preponderance was highest for subjects with disease onset at ages 13 (18 cases, female/male ratio ϭ 3.5:1) and 14 (26 cases, female/male ratio ϭ 7.67:1). Although numbers are small, these data support the theory that hormonal changes related to puberty, especially sex hormones, may play an important role in MS onset.…”

“…Subjects were ascertained from the UBC MS Clinic's computerized database (MS-COSTAR). 22 Inclusion criteria for this study were 1) diagnosis of clinically definite (CD) MS 23 ; 2) clinical onset (first documented sign or symptom) before age 16; and 3) longitudinal follow-up at the UBC MS Clinic for at least 1 year. The studies based on MS-COSTAR are frequently reported as population-based.…”

O potrzebie stworzenia polskiego rejestru chorych na stwardnienie rozsiane

“…pacjentów, z czego ok. 4 tys. aktywnych[31,32]. D³ugoterminowe badania kontrolne by³y prowadzone przez ponad 20 lat przez g³ówn¹ klinikê uniwersytetu i dwa satelitarne ooerodki.…”