Real‐world clinical experience in the Connect^® chronic lymphocytic leukaemia registry: a prospective cohort study of 1494 patients across 199 US centres

Abstract

SummaryThe clinical course of chronic lymphocytic leukaemia (CLL) is heterogeneous, and treatment options vary considerably. The Connect® CLL registry is a multicentre, prospective observational cohort study that provides a real‐world perspective on the management of, and outcomes for, patients with CLL. Between 2010 and 2014, 1494 patients with CLL and that initiated therapy, were enrolled from 199 centres throughout the USA (179 community‐, 17 academic‐, and 3 government‐based centres). Patients were grouped by line of therapy at enrolment (LOT). We describe the clinical and demographic characteristics of, and practice patterns for, patients with CLL enrolled in this treatment registry, providing patient‐level observational data that represent real‐world experiences in the USA. Fluorescence in situ hybridization (FISH) analyses were performed on 49·3% of patients at enrolment. The most common genetic abnormalities detected by FISH were del(13q) and trisomy 12 (45·7% and 20·8%, respectively). Differences in disease characteristics and comorbidities were observed between patients enrolled in LOT1 and combined LOT2/≥3 cohorts. Important trends observed include the infrequent use of genetic prognostic testing, and differences in patient characteristics for patients receiving chemoimmunotherapy combinations. These data represent experiences of patients with CLL in the USA, which may inform treatment decisions in everyday practice.

Real‐world testing and treatment patterns in chronic lymphocytic leukemia: A SEER patterns of care analysis

“…The SEER POC data set allows for a thorough analysis of trends in a population-based sample, which represents the larger US population compared with clinical trial or single insurance claim data sets. It differs from the Connect CLL registry, 18 which is a multisite, community-based registry consisting only of treated patients with CLL, because we are able to describe testing and treatment patterns within 2 years of diagnosis for all patients with CLL, including the majority of patients who initially are observed. We reviewed the NCCN guidelines for the treatment of CLL from 2008 through 2010 and 2014 through the present.…”

Outcomes of front‐line ibrutinib treated CLL patients excluded from landmark clinical trial

“…Some prognostic information was missing; IGHV mutational analysis was collected in only slightly more than half of the patients included. This omission reflects lack of testing and emphasizes the importance of fully characterizing prognosis in CLL, as it could have implications for choice of front-line therapy 15. Although iwCLL response criteria and CTCAE criteria for AEs were suggested to standardize data across centers, central review of toxicities, responses, and outcomes were outside the scope of this study.…”

Mutational status of IGHV is the most reliable prognostic marker in trisomy 12 chronic lymphocytic leukemia

“…Tiziana D'Agaro, 1 Michaela Cerri, 2 Annalisa Chiarenza, 3 Kari G. Chaffee, 4 Adalgisa Condoluci, 5 Giovanni D'Arena, 6 Michele Spina, 7 Francesco Zaja, 8 Gabriele Pozzato, 9 Francesco Di Raimondo, 3 Davide Rossi, 5 Giovanni Del Poeta, 10 …”