Evaluation of the cost and effectiveness of diverse recruitment methods for a genetic screening study

Abstract

Purpose: Recruitment of participants from diverse backgrounds is crucial to the generalizability of genetic research, but has proven challenging. We retrospectively evaluated recruitment methods used for a study on return of genetic results. Methods: The costs of study design, development, and participant enrollment were calculated, and the characteristics of the participants enrolled through the seven recruitment methods were examined. Results: A total of 1118 participants provided consent, a blood sample, and questionnaire data. The estimated cost across recruitment methods ranged from $579 to $1666 per participant and required a large recruitment team. Recruitment methods using flyers and staff networks were the most cost-efficient and resulted in the highest completion rate. Targeted sampling that emphasized the importance of Latino/a participation, utilization of translated materials, and in-person recruitments contributed to enrolling a demographically diverse sample. Conclusions: Although all methods were deployed in the same hospital or neighborhood and shared the same staff, each recruitment method was different in terms of cost and characteristics of the enrolled participants, suggesting the importance of carefully choosing the recruitment methods based on the desired composition of the final study sample. This analysis provides information about the effectiveness and cost of different methods to recruit adults for genetic research.

Finding Success in Clinical Trial Recruitment: A Trial Registry Analysis

“…As evidenced here, EHR data has the potential to optimize trial recruitment prediction in a single clinical site though further research is required to highlight its clinical utility (42).…”

An electronic health record (EHR) log analysis shows limited clinician engagement with unsolicited genetic test results

“…Between 2016 and 2017, 1071 eMERGE participants were prospectively enrolled at New York-Presbyterian Hospital (NYP)/Columbia University Irving Medical Center. 17 , 18 The study’s return of results phase began October 1, 2018–May 31, 2019. In total, 1021 participants with “negative” (ie, nondiagnostic) results were mailed a genetic counseling letter and a copy of the molecular pathology report; 50 participants with “positive” (ie, genetic variants classified as Pathogenic or Likely Pathogenic, per the American College of Medical Genetics and Genomics, 19 or a genetic risk variant deemed actionable) results were invited to return for an in-person genetic counseling.…”

GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing

“…Participants were enrolled at Columbia University Irving Medical Center (CUIMC) as part of the eMERGE III consortium. One of the goals of the eMERGE III study at CUIMC was to enroll a diverse cohort of participants naïve to genetic testing (Milo Rasouly et al, 2019). Adult participants able to give written informed consent and willing to provide a blood sample were enrolled using three recruitment methods: clinics, flyers, and staff network; the last consisted of friends, family members, and colleagues of the study staff (Milo Rasouly et al, 2019).…”

“…It was not designed as a representative study. The low rate of patients approached who declined participation reduces the bias associated with the consent to undergo genetic screening (Milo Rasouly et al, 2019); however, the reasons for not completing the survey could be associated with genetic literacy, as participants with low health literacy are underrepresented in this cohort. For instance, healthy individuals who actively volunteered for the study were more likely to fill out the survey, potentially because of the financial incentive or because of higher genetic literacy.…”

“…We therefore hypothesized that low genetic literacy would be associated with lower satisfaction with the informed consent process and poorer understanding of the limitations of genomic testing. We tested those hypotheses in a cohort of individuals who underwent preventive genetic screening as part of the Electronic Medical Records and Genomics (eMERGE) consortium Phase III project (Milo Rasouly et al, 2019). eMERGE III offered all participants' genetic screening using a targeted panel of genes with return of both positive and negative results (eMERGE Consortium, 2019).…”