Background/Purpose: The ACR-sponsored RISE (Rheumatology Informatics System for Effectiveness) Registry is an electronic health record (EHR)-based national database of rheumatology clinical visits. De-identified patient data are currently extracted and tabulated from the EHRs of over 50 clinics, representing 250 clinicians.  At this time, the majority contributing clinicians are in community-based practices (98.7%).  We identified and characterized patients with prevalent systemic lupus erythematosus (SLE) and undifferentiated connective tissue disease (UCTD) in RISE and studied the ICD9 and ICD10 coding.

Methods:   We included each patient’s last visit in the RISE Registry between April 1 2015 and March 31 2016.  For ICD9, SLE and UCTD were defined using 710.0 and 710.9.  For ICD10, SLE and UCTD were defined using codes M32.0-M32.9 and M35.9, respectively. Patient characteristics, ICD9 and ICD10 classification from the last visit for each individual patient during this time were included in the analysis. We examined the primary ICD10 rheumatology diagnosis for all patients with an ICD9 code of 710.9 for UCTD.

Results: Patients with prevalent SLE and UCTD in RISE were, on average, in their early fifties and approximately one third were on Medicare.  Both groups were around 90% female.  Although patients with these diagnoses were predominantly white, those with SLE were more likely to be black than those with UCTD.  According to ICD9 codes, 13,416 patients had SLE, and 10,698 had UCTD.  Fewer patients had ICD10 codes, likely due to the more recent introduction of ICD10.  By ICD10 coding, 10,813 SLE patients and 3,624 UCTD patients were identified. Of SLE patients, 90% of patients were identified using a general SLE ICD10 code: 4,173 had code M32.19 (SLE, other organ), 3,146 had code M32.9 (SLE unspecified), 1,797 had code M32.10 (SLE organ unspecified), and 667 had code M32.8 (other forms of SLE). Smaller numbers of patients were given more specific lupus diagnoses, including 689 with SLE glomerular (M32.14), 174 with SLE lung involvement (M32.13), 81 with SLE pericarditis (M32.12), and 6 with SLE endocarditis (M32.11).  Some patients had multiple SLE codes. The ICD10 coding varied for those with an ICD9 code of 710.9 for UCTD.  The most common codes were for unspecified systemic connective tissue disease or overlap syndrome (3,624 had M35.9, 816 had M36.8, 516 had M35.8, and 391 had M35.1).  Of those identified as UCTD by ICD9 coding, 15.7% had M32 codes for SLE, 14.7% had M35 codes for Sjogren’s syndrome, 2.9% had M34 codes for scleroderma, and 2.1% had M33 codes for myositis.

Conclusion: The population within the RISE Registry provides a unique cohort of lupus patients followed, up to this point in the registry, entirely by community clinicians. The transition from ICD9 to ICD10 may result in some changed diagnoses, particularly with some movement from UCTD to more specific diagnoses.  RISE includes data on prescribed medications, labs, and patient-reported or physician-reported disease activity measures.  Studying this patient group will provide unique insight into the day-to-day community management, prognosis and complications of patients living with SLE throughout the United States.     Table. Characteristics of patients with SLE or UCTD in the RISE Registry between April 1, 2015 and March 31, 2016, presented as % unless otherwise noted

 * Medicaid insurance status is not currently accurately reported in the RISE registry. ** presented as mean (sd)