Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementation Consortium (SCDIC).

Published online

Journal Article

Sickle cell disease (SCD) is a genetic disorder predominantly affecting people of African descent and is associated with significant morbidity and mortality. To improve SCD outcomes, the National Heart Lung and Blood Institute funded eight centers to participate in the SCD Implementation Consortium. Sites were required to each recruit 300 individuals with SCD, over 20 months. We aim to describe recruitment strategies and challenges encountered. Participants aged 15-45 years with confirmed diagnosis of SCD were eligible. Descriptive statistics were used to analyze the effectiveness of each recruitment strategy. A total of 2432 participants were recruited. Majority (95.3%) were African American. Successful strategies were recruitment from clinics (68.1%) and affiliated sites (15.6%). Recruitment at community events, emergency departments and pain centers had the lowest yield. Challenges included saturation of strategies and time constraints. Effective recruitment of participants in multi-site studies requires multiple strategies to achieve adequate sample sizes.

Full Text

Duke Authors

Cited Authors

  • Masese, RV; DeMartino, T; Bonnabeau, E; Burns, EN; Preiss, L; Varughese, T; Nocek, JM; Lasley, P; Chen, Y; Davila, C; Nwosu, C; Scott, S; Bowman, L; Gordon, L; Clesca, C; Peters-Lawrence, M; Melvin, C; Shah, N; Tanabe, P; SCD Implementation Consortium,

Published Date

  • October 9, 2020

Published In

PubMed ID

  • 33034793

Pubmed Central ID

  • 33034793

Electronic International Standard Serial Number (EISSN)

  • 1557-1920

Digital Object Identifier (DOI)

  • 10.1007/s10903-020-01102-6


  • eng

Conference Location

  • United States