title: Real-world clinical experience in the Connect®chronic lymphocytic leukaemia registry: a prospective cohort study of 1494 patients across 199 US centres.
abstract: The 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.
authors.affiliation: Center for CLL, Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: Anthony
authors.initials: A
authors.lastname: Mato
authors.affiliation: University of Chicago, Chicago, IL, USA.
authors.forename: Chadi
authors.initials: C
authors.lastname: Nabhan
authors.affiliation: Division of Hematology, Mayo Clinic, Rochester, MN, USA.
authors.forename: Neil E
authors.initials: NE
authors.lastname: Kay
authors.affiliation: Thomas Jefferson University, Philadelphia, PA, USA.
authors.forename: Mark A
authors.initials: MA
authors.lastname: Weiss
authors.affiliation: Leukemia Service, Hematologic Malignancies Section, Department of Medicine, New York-Presbyterian/Columbia University Medical Center, New York, NY, USA.
authors.forename: Nicole
authors.initials: N
authors.lastname: Lamanna
authors.affiliation: UCSD, Moores Cancer Center, La Jolla, CA, USA.
authors.forename: Thomas J
authors.initials: TJ
authors.lastname: Kipps
authors.affiliation: NorthShore University Health System, Evanston, IL, USA.
authors.forename: David L
authors.initials: DL
authors.lastname: Grinblatt
authors.affiliation: Sarah Cannon Research Institute/Tennessee Oncology PLLC, Nashville, TN, USA.
authors.forename: Ian W
authors.initials: IW
authors.lastname: Flinn
authors.affiliation: Section of Oncology/Hematology, Ingalls Hospital, Harvey, IL, USA.|Department of Medicine, University of Chicago, Chicago, IL, USA.
authors.forename: Mark F
authors.initials: MF
authors.lastname: Kozloff
authors.affiliation: Emory University, Atlanta, GA, USA.
authors.forename: Christopher R
authors.initials: CR
authors.lastname: Flowers
authors.affiliation: Carol G. Simon Cancer Center, Morristown Memorial Hospital, Morristown, NJ, USA.
authors.forename: Charles M
authors.initials: CM
authors.lastname: Farber
authors.affiliation: Celgene Corporation, Summit, NJ, USA.
authors.forename: Pavel
authors.initials: P
authors.lastname: Kiselev
authors.affiliation: Celgene Corporation, Summit, NJ, USA.
authors.forename: Arlene S
authors.initials: AS
authors.lastname: Swern
authors.affiliation: Celgene Corporation, Overland Park, KS, USA.
authors.forename: Kristen
authors.initials: K
authors.lastname: Sullivan
authors.affiliation: Celgene Corporation, San Francisco, CA, USA.
authors.forename: E Dawn
authors.initials: ED
authors.lastname: Flick
authors.affiliation: Willamette Valley Cancer, US Oncology, Springfield, OR, USA.
authors.forename: Jeff P
authors.initials: JP
authors.lastname: Sharman
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000971:Antineoplastic Combined Chemotherapy Protocols / Q000627:therapeutic use; D002869:Chromosome Aberrations; D019468:Disease Management; D005260:Female; D006801:Humans; D015451:Leukemia, Lymphocytic, Chronic, B-Cell / Q000175:diagnosis / Q000235:genetics / Q000473:pathology / Q000628:therapy; D008297:Male; D008875:Middle Aged; D010818:Practice Patterns, Physicians'; D011379:Prognosis; D011446:Prospective Studies; D012042:Registries; D016896:Treatment Outcome; D055815:Young Adult
keywords: Connect® CLL Registry; chemoimmunotherapy; chronic lymphocytic leukaemia; patient characteristics; practice patterns