Background/Purpose: The spondyloarthritides are a group of conditions characterized by inflammation in the axial skeleton or peripheral joints.  The arthritis may present as the primary manifestation (e.g. ankylosing spondylitis, reactive arthritis), or a related condition may predominate (inflammatory bowel disease (IBD), uveitis, or cutaneous psoriasis). To better characterize the clinical and pathophysiologic aspects of these diseases, a registry for veterans with spondyloarthritis and related conditions was initiated in 2007.

 Methods: A set of electronic medical record templates was developed for standardizing collection of clinical information at outpatient visits for spondyloarthritis patients. Internal Review Board (IRB) approval for the PULSAR registry was obtained at 7 VA sites (Albany, NY, Dallas, TX, Denver, CO, Jackson, MS, Phoenix, AZ, Salt Lake City, UT, Washington, DC). Data collected includes demographics (age, gender, race/ethnicity, education, smoking status, comorbidities) and disease-specific features (disease classification, disease activity measures (BASDAI, BASFI, pain and global assessments, psoriasis area and global assessments), medications, laboratory and imaging results, and HLA-B27 status).  Each patient’s DNA, RNA, serum, and plasma are stored in a biorepository.

Results: The PULSAR registry has enrolled 513 patients, whose diagnoses are psoriatic arthritis (29.2%), ankylosing spondylitis (20.7%), reactive arthritis (6.2%), anterior uveitis (5.5%), and IBD-related arthritis (3.7%). Patients without arthritis but with IBD or cutaneous psoriasis make up the rest of the registry and are available as controls. To date, 3677 clinic visits have been recorded, representing 2246 patient years of observation. Patients are 92% male, with mean age of 58.5 years and 13 or more years of schooling in 61.7% of the cohort. Current tobacco use is present in 24% while 62% are former smokers. Of 275 patients tested to date, 58.5% are HLA-B27 positive. The most common comorbidities are hypertension, hyperlipidemia, osteoarthritis, diabetes, and obesity.   Forty percent are currently on biologic medication, 39% take an analgesic or NSAID, 36% are on a traditional DMARD, and 29% take an osteoporosis medication.  The five most commonly used medications are adalimumab, methotrexate, etanercept, hydrocodone, and ibuprofen (Table).

Conclusion: The PULSAR registry is a growing resource for study of spondyloarthritis and related conditions. Anti-TNFa medications are the most commonly prescribed drugs in the registry. Standardized multi-site data collection allows for improved disease characterization and assessment of disease activity. As most participants receive all their medical care in the VA system, a particular strength of PULSAR is the comprehensive acquisition of pharmacy and comorbidity data.