Design and implementation of a longitudinal multicenter database
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Longitudinal data obtained from patients with a clinical diagnosis of Alzheimer's disease (AD) and from normal control subjects enrolled in the Consortium to Establish a Registry for Alzheimer's Disease (CERAD) were centrally maintained in electronic files at the CERAD Methodology and Data Management Center (MDMC) at the University of Washington, Seattle. In addition to creating and maintaining this database, the MDMC assisted in the design of the data collection forms and studies of the reliability of the data collected. MDMC personnel advised CERAD investigators of the strengths and limitations of available data, created subsets of appropriate data for analysis, provided statistical advice, and in many cases, performed analyses.
Database activities. The database was written in SAS (SAS, Inc., Cary, NC) whose database utilities and statistical procedures are supported by most universities. Thus, SAS data files could be easily transferred to CERAD sites and investigators interested in the data. SAS files can be read by many other software packages, including S-Plus (StatSci, Inc., Seattle, WA) statistical programming software used extensively by MDMC statisticians. SAS also has the standard query language SQL. The SAS products Base, AF, SCL, FSEDIT, and GRAPH were used to create and maintain the database and create reports.
The database was relational, with files related by identification code(ID) and visit number. Each subject had a unique six-digit ID number, which also identified the site and subject's status as patient or control subject. For confidentiality, no names or identifying information were used.
There was a separate file for each CERAD form, with records for each subject corresponding to initial and annual follow-up visits. Index files were also developed; these indicated which forms had been submitted for each subject, the subject's status (deceased, date entered nursing home, data dropped out, and so forth), and the dates the forms were completed …
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