Alzheimer's Disease Electronic Registry: Providing Data to Describe the Epidemiological Profile of People Living with Alzheimer's Disease in Puerto Rico

BACKGROUND:  Alzheimer’s disease (AD) imposes a great burden in Puerto Rico. Since 2008, AD has been the fourth leading cause of death. Morbidity data is scarce; therefore, there is not a clear overview of the epidemiological profile of people living with AD in Puerto Rico. In 1999, the Puerto Rico legislature passed a law to establish an AD registry. Even though there were many efforts to establish the registry, it was not until May 1, 2014 that the Puerto Rico Department of Health launched a web-based electronic registry. The registry is housed under the Chronic Disease Prevention and Control Division.

METHODS:  The Puerto Rico AD electronic registry captures data from 42 hospitals. The collected data include sociodemographics, medical and family histories, pharmacological treatment, among other variables. The registry provided the mechanisms to minimize duplicated cases by creating a unique identification number using 3 variables. It also generates a database in a format that can be easily exported to various statistical analysis packages. The registry publishes quarterly reports with statistics to describe the reported cases. Statistics are calculated using R version 3.1.2. 

RESULTS:  During 2014, 5,489 cases were reported to the Puerto Rico AD registry. The majority of cases were female (64.8%) and had 80 years of age or older (63.1%). Only 3.4% of reported cases had less than 65 years of age. The most frequent comorbidities were hypertension (32.4%), diabetes (19.5%), and other neurological disorders (13.5%). Almost all reported cases had health insurance coverage (99.8%). 

CONCLUSIONS:  We estimate that the registry has captured about 25% of diagnosed AD cases in Puerto Rico. Despite of this, the sociodemographic distributions of reported cases are similar to what has been reported in other population–based studies. For example, our results showed that about 3% of the AD cases in Puerto Rico are early onset, corresponding to the distribution reported in the scientific literature. Our main limitation is the amount of missing information in other variables that do not permit us to better describe the cases in terms of medical and family histories. In the future, our efforts must focus on increasing the number of providers reporting cases and encouraging them to complete the questionnaire to reduce missing data. This will enable us to better understand the epidemiological profile of AD in Puerto Rico, plan services, and adequately allocate resources for this population, their family, and caregivers.