Background/Purpose:

A patient registry is an organized system that collects uniform data to allow evaluation of specific outcomes for a population with a particular disease. They can enable observation of the natural history of disease, clinical/cost effectiveness, treatment, quality of care, and factors that influence prognosis and outcomes. Osteoporosis research using administrative claims lacks clinical characteristics including bone mineral density (BMD) and fracture risk. To fill this gap a dual energy x-ray absorptiometry (DXA) registry was established at the Cleveland Clinic (CCF) in 2009.

Methods: The CCF DXA Data Entry System is a web-based intranet tool designed to capture data important to patient care and osteoporosis research.  The system receives real-time scheduling messages from the electronic medical record, generates an online data collection form for each DXA bone density scan appointment, and pre-loads them with patients’ demographic information.. DXA technologists log in from any workstation connected to the intranet and are guided through a data entry page for each appointment that helps to ensure complete and accurate data collection. Data on bone density (T and Z-scores, g/cm2), self-reported osteoporosis treatment, and FRAX^® clinical risk factors are recorded. From 2009 through 2012, data on a total of 35,373 patients were entered into the registry, which represents 83.6% of the eligible population (4.3% missing data, 12.1% refused) and are stored in a secure SQL Server database and have been successfully linked with 99.1% of patients’ medical record data using Explorys Inc. proprietary software. In 2013, FRAX^®10-year risk of major osteoporotic fracture and hip fracture was computed for all registry subjects.

Results: The registry includes 28,095 postmenopausal women, 5,079 men ≥50, 1,549 premenopausal women, and 650 men <50. Of these, 11.9% of postmenopausal women, 9.6% of men ≥50, 4.8% of premenopausal women, and 6.5% of men <50 have now had a 2^nd DXA. To date we have investigated the relationship between registry data (FRAX^®clinical risk factors and bone mineral density) and initiation of drug therapies per NOF guidelines, evaluated the frequency of DXA in organ transplant patients, and the rate of osteoporosis therapy in glucocorticoid treated subjects, among other projects. We found that 62.4% of rheumatologists and 52.2% of non-rheumatologists had started osteoporosis therapy within 365 days after their patient had a T-score ≤ 2.5, that 78% of patients on glucocorticoids had osteoporosis therapy initiated within 6-months, and that 42.5% of patients with a T-score <-2.5 had a follow-up DXA within 3-years. Ongoing projects includes evaluation of premenopausal women (n= 176) and men <50 (n= 161) with Z-score ≤ 2.0 (low bone mass for age), glucocorticoid users, effect of BMI and vitamin D on BMD, changes in BMD over time, and possible interventions for patients with a T-score ≤-2.5 who do not report osteoporosis therapy.

Conclusion: The CCF DXA Registry has enrolled 35, 373 patients with approximately 10-15,000 new patients each year. This large and longitudinal registry offers opportunities to monitor quality indicators, assess patient care, and conduct observational and interventional research.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/cleveland-clinic-dual-energy-x-ray-absorptiometry-registry-a-web-based-tool-designed-for-efficient-collection-of-bone-density-and-osteoporosis-related-clinical-risk-factor-data/