OBJECTIVES: To report treatment and prognostic testing patterns for patients enrolled in informCLL (NCT02582879), a US-based, prospective, observational registry of patients receiving treatment for chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma.

METHODS: In October 2015, registry enrollment began for eligible patients ≥18 years who started approved anti-CLL therapy within 45 days. Initial treatments were grouped as: ibrutinib, chemoimmunotherapy (CIT), chemotherapy, immunotherapy, and other novel agents. Available prognostic biomarker testing was recorded at registry enrollment. Descriptive analyses for testing and dosing rates are presented.

RESULTS: At time of analysis (11/30/2018), 1181 patients (previously untreated [1L]: n=686; relapsed/refractory [R/R]: n=495) were enrolled. Median (range) follow-up time was 11.8 months (0.03–35.88). Most patients (95%) were treated in community settings; median age was 70 years (34–95). At enrollment, the most common treatment groups were ibrutinib (44%, 518/1181) and CIT (34%, 405/1181). CIT was most common in 1L patients (43%, 296/686); ibrutinib was most common in R/R patients (48%, 238/495). Prognostic biomarker testing was performed in 29% (FISH) and 11% (IGHV) of all patients. Among those tested, 30% (26/86) with del(17p) and 38% (35/93) with unmutated IGHV received CIT. Of patients receiving ibrutinib, 88% started at 420 mg/day; 81% did not require dose modifications. In patients completing treatment, median cycles received were 5 bendamustine+rituximab, 5 fludarabine+cyclophosphamide+rituximab, and 6 obinutuzumab+chlorambucil, with 85/109 (78%), 28/33 (85%), and 18/44 (41%), respectively, receiving <6 cycles.

CONCLUSIONS: Low prognostic testing rates (≤29%) were reported in informCLL; approximately one-third of high-risk patients still received CIT despite current treatment guidelines. These results highlight that increased awareness and education are needed to support routine prognostic testing to better guide treatment decisions that optimize clinical outcomes for patients with CLL and real-world outcomes for payors.