I need to recruit from my own patients. I can t get a list of patients being seen with a diagnosis. I need access to all patients being seen even in satellite clinics and at other institutions with the ability to sort by diagnosis, age, and gender. If people are captured when they enter the system, clinical and social scientists could then query the data to get preliminary information for a study. It s important to distinguish between patients and subjects.
Records are of two types, medical and research.
For the IRB, the genetics component of the medical record is important. As clinical investigators we need integration, need to have all existing databases talk to each other. We created a database with 60 variables. The variables of interest to us are not necessarily those that would be of interest to other researchers. Because research interests change over time, the variables would need to be modified as research interests changed.