Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementation Consortium (SCDIC)
| Autor: | Patricia Lasley, Ebony Burns, Chinonyelum Nwosu, Caroline B. Davila, Liliana Preiss, Nirmish Shah, Judith M Nocek, Samantha M. Scott, Cathy L. Melvin, Yumei Chen, Emily Bonnabeau, Lauren Gordon, Paula Tanabe, Taniya Varughese, Terri DeMartino, Rita V Masese, Cindy Clesca, Marlene Peters-Lawrence, Latanya Bowman |
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| Jazyk: | angličtina |
| Rok vydání: | 2020 |
| Předmět: |
medicine.medical_specialty
Epidemiology African descent Disease Anemia Sickle Cell 03 medical and health sciences 0302 clinical medicine medicine Humans 030212 general & internal medicine Registries African american Original Paper 030505 public health Patient registry Descriptive statistics business.industry Public health Sickle cell disease Public Health Environmental and Occupational Health Black or African American Multi-site studies Emergency medicine Recruitment Minority populations 0305 other medical science business Emergency Service Hospital Barriers |
| Zdroj: | Journal of Immigrant and Minority Health |
| ISSN: | 1557-1920 1557-1912 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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