The goal of the Georgetown Brain Health Study, since the initial gathering of the first two hundred people in Sun City Texas, was to begin a journey to capitalize on the power of information and to empower visionary seniors to be part of something that will leave a legacy. The idea was to organize as a community to share medical information on brain health as part of a community-based clinical study working collaboratively over a long period of time with medical research centers in Texas and the rest of the world. The model for such a longitudinal multigenerational study was the well documented “Framingham Heart Study” which began in 1948 with 5000 residents of Framingham Massachusetts agreeing to participate in a long-term ongoing study of heart disease. This study, which regularly monitored the heart health and habits of its study subjects, is now considered one the most important epidemiological studies in medical history. Its contributions are numerous to the management of heart health; exercise, the role cigarette smoking plays, how elevated blood pressure, dietary fat and cholesterol can increase the risk of heart attack and stroke. Today, about 75 percent of the original Framingham participants have died, but in 1971 the study began enrolling more than 5000 children of the participant’s along with their spouses. These generational studies are providing researchers valuable information about genetic patterns of heart disease.
In the formation of the Georgetown Brain Health Study, the organizers have learned from the design of Framingham Study and also believe that recent technological advances in computing and machine learning will accelerate that impact of this research on brain disease. During the first 25 years of this Heart Study the use of computer technology was primitive and thus, the data during this period was all on paper. The Georgetown Brain Study, properly organized and supported, offers the opportunity collect study subject data on seniors, their children and grandchildren from the beginning and to exploit technology, communications and computing resources in a way that has not been brought together previously. Study subjects enrolled in the Georgetown study will use web-based technologies to answer questions, assess health, mood, cognition and others on a regular basis. The process is facilitated by medical professionals who will train and consult but for the most part the data entry from those in the study will be the work of the study subjects themselves. This web-based portal for the enrollment and data entry extends to those who wish to participate well beyond the boundaries of Georgetown. Properly marketed and facilitated in combination with genetic information that is now available, the Georgetown Brain Study has the potential to grow so that the power of numbers and technology brings answers, and leads to discovery into focus much more quickly.