Organizing a study of over 10,000 people, undertaken over 10 years in 39 communities that span six time-zones, that involved a combination of interviews, cognitive testing, clinical examinations in two languages, and that also included blood collection, laboratory testing and access to public records, requires (at least) careful planning.

Committee Structure:

The CSHA established three levels of management to organize how decisions were to be made, by whom, and how responsibility for possible errors would be shared. First, a routine operations group oversaw implementation of the protocol and monitored progress in data collection and the budget. Second, a steering committee included the operations group plus a representative from each region to ensure their input into the study design, implementation and eventual reporting of results. Finally, an external advisory committee offered a valuable perspective from people not directly involved in the study.

Staff Selection and Training:

Personnel selection was left to each centre director, although job descriptions were drafted by the coordinating centre. The size of the study (over 100 interviewers) made it infeasible to train the staff in one session. Hence we first trained the 18 centre coordinators, and then trained them to train their interviewers. This strategy reduced travel costs and gave manageable numbers in each training session; it allowed subsequent training to occur simultaneously in each study centre.

Training was made as practical and problem-oriented as possible. Training manuals and videos suggested answers to commonly asked questions and illustrated interviews properly carried out, followed by interviews containing errors that trainees were to identify and correct.

Communications:

Communication channels varied according to the number of centres involved, the purpose of the communication and the phase of the study. Early on, information flowed mainly from the coordinating centre to field centres; this was typically followed by two-way discussions that served to support the centres and to find the best way to adapt the protocol to local circumstances. Later, information on progress and data flowed back from the field centres to the coordinating centre. Our choice of communication channels evolved considerably over the course of the study, as technology advanced.

A formal communication plan was developed to introduce the study. Brochures were used to explain the study to authorities in each sampling area, such as the police, health and social services agencies, the local Alzheimer societies, and the local medical associations. Letters of endorsement were also sought from these groups, and used in explaining the legitimacy of the study to potential participants.

Monitoring Progress:

We developed a computer monitoring system with a component for the coordinating centre and modules for each field centre. The field centre modules stored identifying data on the people in the sample and kept track of each person’s progress through the study. From this the modules generated routine reports on recruitment and follow-up rates which were sent to the coordinating centre. The field centre modules also produced interview lists, sorted geographically to assist in allocating interviews to each interviewer, and form letters for contacting the study participants.

The coordinating centre module merged the routine reports from the field centre modules to generate status reports on the progress of the study. The system also linked these reports to the computer files as data were entered to permit confirmation that the data were complete on each participant.

Publications:

The challenge of coordinating publications among over 70 study investigators was addressed by agreeing to publish the core results of the study (7 articles) jointly under the authorship of “The Canadian Study of Health and Aging Working Group.” In addition, the coordinating centre kept a master list of proposed topics for publication by the study investigators. The list was periodically updated, and progress with the publications recorded on the list. The goal was to encourage publication while ensuring that overlapping reports would not simultaneously be prepared by different study investigators. Where apparently similar topics were suggested independently, we put the proposed authors in touch with each other to reach agreement over whether to collaborate or to redefine the topics. This simple approach proved successful and we have enjoyed considerable productivity with minimal dissent over authorship.