Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementa
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ORIGINAL PAPER
Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementation Consortium (SCDIC) Rita V. Masese1 · Terri DeMartino1 · Emily Bonnabeau1 · Ebony N. Burns1 · Liliana Preiss2 · Taniya Varughese3 · Judith M. Nocek4 · Patricia Lasley5 · Yumei Chen6 · Caroline Davila7 · Chinonyelum Nwosu8 · Samantha Scott9 · Latanya Bowman9 · Lauren Gordon10 · Cindy Clesca10 · Marlene Peters‑Lawrence11 · Cathy Melvin7 · Nirmish Shah1 · Paula Tanabe1 · SCD Implementation Consortium Accepted: 1 October 2020 © The Author(s) 2020
Abstract 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. Keywords Recruitment · Sickle cell disease · Multi-site studies · Minority populations · Barriers
Introduction Participant recruitment is an integral component of research studies involving human subjects. Adequate recruitment has proven to be challenging, particularly in studies focusing on conditions that predominantly affect minority populations
such as sickle cell disease (SCD) [1–4]. SCD is a complex, chronic, genetic blood disorder that primarily affects people of African descent [5, 6]. In the United States, 1 in 396 African Americans has SCD, and one in 14 carry the trait [5]. The disease has several complications including severe pain episodes, acute chest syndrome and stroke which lead to
* Rita V. Masese [email protected]
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Medical University of South Carolina, Charleston, SC, USA
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St. Jude Children’s Research Hospital, Memphis, TN, USA
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Augusta University Center for Blood Disorders, Augusta, GA, USA
Duke University School of Nursing, DUMC 3322, 307 Trent Drive, Durham, NC 27710, USA
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2
RTI International, Durham, NC, USA
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3
Program in Occupational Therapy, Washington University School of Medicine, St. Louis, MO, USA
Department of Emergency Medicine, Icahn School of Medicine at Mount Sinai, New York, USA
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Division of Blood Diseases and Resources, National Institute of Health, National Heart Lung and Blood Institute,
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