title: Stroke Investigative Research and Education Network: Community Engagement and Outreach Within Phenomics Core.
abstract: Stroke is the leading cause of neurological hospital admissions in sub-Saharan Africa (SSA) and the second leading cause of death globally. The Stroke Investigative Research and Education Network seeks to comprehensively characterize the genomic, sociocultural, economic, and behavioral risk factors for stroke and to build effective teams for research to address and decrease the burden of stroke and other noncommunicable diseases in SSA. One of the first steps to address this goal is to effectively engage the communities that suffer the high burden of disease. The purpose of this article is to describe plans to elucidate information about knowledge, attitudes, beliefs, and practices about stroke and genomics from patients, caregivers, and local leaders, to recruit participation in research activities and dissemination of ongoing results, as well as to facilitate research uptake and impact within the broader communities of scientists, health professionals, policy makers, and others. We describe the (a) study sites and their communities; (b) plans for community advisory boards, focus groups, and surveys; (c) methods for data management in REDCap database; (d) analyses of qualitative data; (e) evaluation of community and public engagement across multiple sites and research teams in SSA and the United States; (f) use of RE-AIM for presentation of evaluation data; and (g) community indicators of success. This is the first of its kind public outreach engagement initiative to evaluate stroke and genomics in SSA, and has implications as a model for assessment in other high-stroke risk populations.
authors.affiliation: Medical University of South Carolina, Charleston, SC, USA jenkinsc@musc.edu.
authors.forename: Carolyn
authors.initials: C
authors.lastname: Jenkins
authors.affiliation: University of Ibadan, Ibadan, Nigeria.
authors.forename: Oyedunni Sola
authors.initials: OS
authors.lastname: Arulogun
authors.affiliation: Kwame Nkrumah University, Kumasi, Ghana.
authors.forename: Arti
authors.initials: A
authors.lastname: Singh
authors.affiliation: Bayero University, Kano, Nigeria.
authors.forename: Aliyu T
authors.initials: AT
authors.lastname: Mande
authors.affiliation: Ahmadu Bello University, Zaria, Nigeria.
authors.forename: Eric
authors.initials: E
authors.lastname: Ajayi
authors.affiliation: Ahmadu Bello University, Zaria, Nigeria.
authors.forename: Benedict
authors.initials: B
authors.lastname: Calys-Tagoe
authors.affiliation: University of Ghana, Accra, Ghana.
authors.forename: Bruce
authors.initials: B
authors.lastname: Ovbiagele
authors.affiliation: Medical University of South Carolina, Charleston, SC, USA.
authors.forename: Daniel T
authors.initials: DT
authors.lastname: Lackland
authors.affiliation: Kwame Nkrumah University, Kumasi, Ghana.
authors.forename: Fred Stephen
authors.initials: FS
authors.lastname: Sarfo
authors.affiliation: Federal Medical Center, Abeokuta, Nigeria.
authors.forename: Rufus
authors.initials: R
authors.lastname: Akinyemi
authors.affiliation: Korle BU Teaching Hospital, Accra, Ghana.
authors.forename: Albert
authors.initials: A
authors.lastname: Akpalu
authors.affiliation: Ahmadu Bello University, Zaria, Nigeria.
authors.forename: Reginald
authors.initials: R
authors.lastname: Obiako
authors.affiliation: University of Ibadan, Ibadan, Nigeria.
authors.forename: Enzinne Sylvia
authors.initials: ES
authors.lastname: Melikam
authors.affiliation: University of Ghana, Accra, Ghana.
authors.forename: Ruth
authors.initials: R
authors.lastname: Laryea
authors.affiliation: Ahmadu Bello University, Zaria, Nigeria.
authors.forename: Vincent
authors.initials: V
authors.lastname: Shidali
authors.affiliation: University of Ghana, Accra, Ghana.
authors.forename: Kwamena
authors.initials: K
authors.lastname: Sagoe
authors.affiliation: Ahmadu Bello University, Zaria, Nigeria.
authors.forename: Philip
authors.initials: P
authors.lastname: Ibinaiye
authors.affiliation: University of Ibadan, Ibadan, Nigeria.
authors.forename: Adekunie Gregory
authors.initials: AG
authors.lastname: Fakunle
authors.affiliation: Bayero University, Kano, Nigeria.
authors.forename: Lukman F
authors.initials: LF
authors.lastname: Owolabi
authors.affiliation: University of Ibadan, Ibadan, Nigeria.
authors.forename: Mayowa O
authors.initials: MO
authors.lastname: Owolabi
mesh_terms: D055812:Community-Based Participatory Research / Q000379:methods*; D005260:Female; D005869:Ghana / Q000453:epidemiology; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D009549:Nigeria / Q000453:epidemiology; D012107:Research Design; D012307:Risk Factors; D020521:Stroke / Q000453:epidemiology* / Q000235:genetics; D011795:Surveys and Questionnaires
keywords: REDCap database; SSA; community advisory boards; community engagement; focus groups; genomics; stroke; sub-Saharan Africa