A Clinical Database Supports Better Patient Care, and Clinical Research in a Sickle Cell Center at a Large County Hospital.

The Georgia Comprehensive Sickle Cell Center at Grady Health System was enabled in 1985 by an appropriation of the Georgia State Legislature. The Center developed as the World’s first dedicated 24 hour acute care center is committed to patients with sickle cell syndromes. The Acute Care Center is equipped with 12 observation beds and patients are treated for up to 8 hours before a decision about hospital admission is made. Continuity follow-up clinics are held in the adjacent clinic area with 6 exam rooms, a waiting room, reception area, staff offices, and a multimedia teaching center for patients. Care is provided by a multidisciplinary team of physicians, nurses, physician assistants, nurse practitioners, clinic assistants, secretarial support, social workers, psychologists, and a clinical nurse specialist in psychiatry. The state contract required 16 demographic characteristics on each patient seen by the center staff. To accomplish this, a relational database was developed to manage this large dataset. This database was initially established in R-Base format but subsequently transitioned to Windows based Access in 1995. The database was designed and implemented mainly to coordinate patient care containing demographics, problem lists, current medications, radiology results and laboratory data. The database also is utilized to manage the business aspects of the Center including making appointments, tracking visits, monitoring transfusions, ordering supplies, and tracking inventory. The database also provides support for research by identifying patients who qualify for research studies, tracking participation in clinical trials, correlating molecular genetic characterization with clinical findings and outcomes. The database presently has over 3500 registered patients. There are over 1608 active patients defined as being seen in the past two years. Phenotypes and ages are outlined in Table 1. The number of active patients in many age groups allows for cross-sectional, age specific analysis of complications in sickle cell disease. The database also facilitates identifying subjects for intervention trials by entry of study inclusion and exclusion criteria as search criteria for inquiries. The use of the database as a clinical management tool captures information during patient care activities minimizing the need for separate data entry. Data from 20 years of following patients in this data set also provides information on natural history, frequency of complications, and impact of interventions in patients with sickle syndromes