Evidence map›Paper›PMID 40739333›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2025

The role of community advisory boards in enhancing recruitment and retention in Alzheimer's disease and related dementia research in Africa: Experience from the READD-ADSP study.

Temitope Farombi, Oyedunni Arulogun, Michelle Nichols, Olorunyomi F Olorunsogbon, Mayowa Ogunronbi, Oyedolapo Oyedola, Eniola Cadmus, Babatunde Ojebuyi, Taofeek A Sanni, Victoria Mutiso and 53 more

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Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

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1citing papers in PubMed
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1 · What the graph read from it

What it found

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3 · Its place in the literature

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1 citing paper in PubMed.

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4 · The record

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5 · Who and what money

Authors and funding

63 authors.

Temitope FarombiTony Anenih Geriatric Center, University College Hospital, Ibadan, Oyo, Nigeria.
Oyedunni ArulogunDepartment of Health Promotion and Education, Faculty of Public Health, University of Ibadan, Ibadan, Oyo, Nigeria.
Michelle NicholsCollege of Nursing, Medical University of South Carolina, Charleston, South Carolina, USA.
Olorunyomi F OlorunsogbonDepartment of Health Promotion and Education, Faculty of Public Health, University of Ibadan, Ibadan, Oyo, Nigeria.
Mayowa OgunronbiInstitute for Advanced Medical Research & Training, College of Medicine, Neuroscience and Ageing Unit, University of Ibadan, Ibadan, Oyo, Nigeria.
Oyedolapo OyedolaInstitute for Advanced Medical Research & Training, College of Medicine, Neuroscience and Ageing Unit, University of Ibadan, Ibadan, Oyo, Nigeria.
Eniola CadmusDepartment of Community Medicine, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
Babatunde OjebuyiDepartment of Communication and Language Arts, Faculty of Arts, University of Ibadan, Ibadan, Nigeria.
Taofeek A SanniDepartment of Community Medicine, Afe Babalola University, Ekiti State and Federal Teaching Hospital, Ido-Ekiti, Ekiti, Nigeria.
Victoria MutisoAfrica Mental Health Research and Training Foundation, Nairobi, Kenya.
Mubashir UthmanDepartment of Epidemiology & Community Health, Faculty of Clinical Sciences, College of Health Sciences, University of Ilorin, Ilorin, Nigeria.
Abdullateef Gbenga SuleDepartment of Family Medicine, Ahmadu Bello University Teaching Hospital, Zaria, Kaduna, Nigeria.
Joy Louise Gumikiriza-OnoriaMakerere University College of Health Sciences, Kampala, Uganda.
Godspower Chibuike OnunkaNeuropsychiatric Hospital, Ita-Oshin, Abeokuta, Ogun, Nigeria.
Benedict Calys-TagoeDepartment of Community Health, University of Ghana Medical School, Korle Bu, Accra Ghana.
Tsimona DinkuCollege of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia.
Ifeoma Adaigwe AmaechiDepartment of Medical Rehabilitation, Faculty of Health Sciences and Technology, College of Health Sciences, Nnamdi Azikiwe University, Anambra, Nigeria.
Adedoyin O OgunyemiDepartment of Community Health and Primary Care, College of Medicine, University of Lagos, Lagos, Nigeria.
Obo Y OnibonDepartment of Sociology and Anthropology, Laboratory of Gender, Dynamics of Social Spaces and Health, University of Parakou, Cotonou, Benin.
Daniel E UkpabiDepartment of Epidemiology and Community Health, Benue State University Teaching Hospital, Makurdi, Benue, Nigeria.
Hypolite O EzinDepartment of Sociology and Anthropology, Laboratory of Gender, Dynamics of Social Spaces and Health, University of Parakou, Cotonou, Benin.
Solomon GyabaahKomfo Anokye Teaching Hospital, Kumasi, Ghana.
Tolulope AfolaranmiDepartment of Community Medicine, College of Health Sciences, University of Jos, Jos, Plateau, Nigeria.
Osimhiarherhuo AdeleyeNeuropsychiatric Hospital, Ita-Oshin, Abeokuta, Ogun, Nigeria.
Nathaniel ColemanDepartment of Obstetrics and Gynaecology, University of Ghana Medical School, Korle Bu, Accra Ghana.
Innocent MwombekiMirembe National Mental Health Hospital & University of Dodoma, Dodoma City, Tanzania.
Damas AndreaMirembe National Mental Health Hospital & University of Dodoma, Dodoma City, Tanzania.
Albertino DamascenoFaculty of Medicine, Eduardo Mondlane University, Maputo, Mozambique.
Abiodun BelloDivision of Neurology, Department of Medicine, University of Ilorin & University of Ilorin Teaching Hospital, Ilorin, Kwara, Nigeria.
Kolawole WahabDivision of Neurology, Department of Medicine, University of Ilorin & University of Ilorin Teaching Hospital, Ilorin, Kwara, Nigeria.
Christine MusyimiAfrica Mental Health Research and Training Foundation, Nairobi, Kenya.
David NdeteiAfrica Mental Health Research and Training Foundation, Nairobi, Kenya.
Paul NwaniDepartment of Medicine, Nnamdi Azikiwe University Teaching Hospital, Nnewi, Anambra, Nigeria.
W Yembe NjamnshiBrain Research Africa Initiative, Cameroon & Neuroscience Lab, FMBS, The University of Yaoundé I, Yaoundé, Cameroon.
Olufisayo ElugbadeboDepartment of Psychiatry, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
Reginald ObiakoDepartment of Medicine, Ahmadu Bello University, Zaria, Kaduna, Nigeria.
Paul OlowoyoDepartment of Medicine, College of Medicine and Health Sciences, Afe Babalola University, Nigeria and Federal Teaching Hospital, Ido Ekiti, Ekiti, Nigeria.
Yared Z ZewdeCollege of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia.
Biniyam A AyeleCollege of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia.
Njideka OkubadejoDepartment of Medicine, Faculty of Clinical Sciences, College of Medicine, Neurology Unit, University of Lagos, Lagos, Nigeria.
Godwin OsaigbovoUniversity of Jos/Jos University Teaching Hospital, Jos, Plateau, Nigeria.
Fred SarfoDepartment of Medicine, Kwame Nkrumah University of Science & Technology, Kumasi, Ghana.
Albert AkpaluDepartment of Medicine, University of Ghana Medical School, Ghana//Korle Bu Teaching Hospital, Accra, Ghana.
Lwere KamadaMakerere University College of Health Sciences, Kampala, Uganda.
Olusegun BaiyewuDepartment of Psychiatry, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
Nakasujja NoelineMakerere University College of Health Sciences, Kampala, Uganda.
Adefolakemi Temitope OgundelePsychogeriatric Unit, Neuropsychiatric Hospital, Abeokuta, Ogun, Nigeria.
Alfred K NjamnshiBrain Research Africa Initiative, Cameroon & Neuroscience Lab, FMBS, The University of Yaoundé I, Yaoundé, Cameroon.
Emmanuel IwuozoNeurology Unit, Benue State University and Benue State University Teaching Hospital, Makurdi, Benue, Nigeria.
Thierry AdoukonouDepartment of Neurology, University of Parakou, Parakou, Benin.
Judith BosheDepartment of Medicine, Kilimanjaro Christian Medical College, Moshi, Tanzania.
Stella-Maria PaddickTranslational and Clinical Research Institute, Newcastle University, UK/Gateshead Health NHS Foundation Trust, Gateshead, Newcastle upon Tyne, UK.
Ernest Okwundu NwazorRivers State University Teaching Hospital, Port Harcourt, Rivers, Nigeria.
Nosakhare OsemwegieDepartment of Medicine, University of Port Harcourt, Port Harcourt, Rivers, Nigeria.
Jean IkangaDepartment of Psychiatry, School of Medicine, University of Kinshasa and Catholic University of Congo, Kinshasa, Democratic Republic of Congo.
Sudha SeshadriGlenn Biggs Institute for Alzheimer's & Neurodegenerative Diseases, University of Texas Health Sciences Center, San, Texas, USA.
Mayowa OwolabiDepartment of Medicine, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
Walker RichardDepartment of Medicine, North Tyneside General Hospital, North Shields, UK.
Goldie ByrdMaya Angelou Centre for Health Equity, School of Medicine, Wake Forest University, Winston Salem, North Carolina, USA.
Rajesh N KalariaTranslational and Clinical Research Institute, Newcastle University, NIHR Biomedical Research Building, Campus for Ageing and Vitality, Newcastle upon Tyne, UK.
Adesola OgunniyiDepartment of Medicine, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
Margaret Pericak-VanceJohn P. Hussman Institute for Human Genomic and the Dr. John T. Macdonald Foundation Department of Human Genetics, University of Miami Miller School of Medicine, Miami, Florida, USA.
Rufus AkinyemiInstitute for Advanced Medical Research & Training, College of Medicine, Neuroscience and Ageing Unit, University of Ibadan, Ibadan, Oyo, Nigeria.ORCID 0000-0001-5286-428X

Funding

Recruitment and Retention for Alzheimer's Disease Diversity Genetic Cohorts in the ADSP (READD-ADSP)U19AG074865 · NIA · UNIVERSITY OF MIAMI SCHOOL OF MEDICINE · PI GOLDIE S. BYRD, William S Bush · 2022 to 2026
$55.3M
The Origins of Alzheimer Disease in African AmericansR01AG072547 · NIA · UNIVERSITY OF MIAMI SCHOOL OF MEDICINE · PI Rufus Olusola Akinyemi, GOLDIE S. BYRD · 2022 to 2026
$26.1M
Characterizing the Genetic Risk for Alzheimer Disease in African and Admixed African-American AncestriesU01AG084545 · NIA · UNIVERSITY OF MIAMI SCHOOL OF MEDICINE · PI GOLDIE S. BYRD, ANTHONY JOHN GRISWOLD · 2024 to 2026
$14.9M
Stroke Investigative Research & Educational Network (SIREN)U54HG007479 · NHGRI · COLLEGE OF MEDICINE, UNIVERSITY OF IBADAN · PI OVBIAGELE, BRUCE, OWOLABI, MAYOWA OJO · 2013 to 2017
$4.2M
Systematic Investigation of Blacks with Stroke - Genomics (SIBS-Genomics) StudyR01NS107900 · NINDS · COLLEGE OF MEDICINE, UNIVERSITY OF IBADAN · PI OVBIAGELE, BRUCE, OWOLABI, MAYOWA OJO · 2018 to 2021
$1.8M
African Neurobiobank for Precision Stroke Medicine - (ELSI) ProjectU01HG010273 · NHGRI · COLLEGE OF MEDICINE, UNIVERSITY OF IBADAN · PI AKINYEMI, RUFUS OLUSOLA, ARULOGUN, OYEDUNNI SOLA · 2018 to 2022
$512k
African Neurobiobank for Precision Stroke Medicine ELSI Project U01HG010273NHGRI NIH HHS U01 HG010273NHGRI NIH HHS U54 HG007479NIA NIH HHS R01 AG072547NIA NIH HHS U01 AG084545NIA NIH HHS U19 AG074865NINDS NIH HHS R01 NS107900The Alzheimer Association GBHI ALZ UK-21-24204The National Institute of Aging/National Institutes of Health R01AG072547The National Institute of Aging/National Institutes of Health U19AG074865The SIREN study U54HG007479The Systematic Investigation of Blacks with Stroke using Genomics (SIBS Genomics) Study R01NS107900The UK Royal Society/African Academy of Sciences FCG/R1/201034The UK Royal Society/African Academy of Sciences FLR/R1/191813
6 · The paper itself

Abstract

introductionThe Recruitment and Retention of Alzheimer's Disease Diversity Genetic Cohorts in the Alzheimer's Disease Sequencing Project (READD-ADSP) was established to bridge the gap in Alzheimer's disease and related dementias (ADRD) research in Africa. We examined the role of Community Advisory Boards (CABs) in improving participant recruitment and retention in ADRD research in Africa, by exploring how culturally sensitive engagement, community trust-building, and stakeholder involvement influence research participation.

methodsA multi-site, multi-phased qualitative study approach that involved establishment of CABs, initial planning meetings and community engagement cum recruitment activities.

resultsTwenty-one CABs (141 members) were established across 14 study sites in 9 African Dementia Consortium (AfDC) member countries. Co-creation planning meetings, culturally sensitive outreaches for brain health, dementia awareness creation, and recruitment were held. DISCUSSION: Establishing CABs within the READD-ADSP project has proven instrumental in co-creating culturally appropriate and community-centered strategies for recruitment and retention in ADRD research in Africa. HIGHLIGHTS: The Recruitment and Retention of Alzheimer's Disease Diversity Genetic Cohorts in the Alzheimer's Disease Sequencing Project (READD-ADSP) project utilizes a community-engaged research (CER) framework to develop a community engagement program and establish Community Advisory Boards (CABs) to enhance participant recruitment and retention. There is a need to standardize CER practices and promote context-sensitive and culturally appropriate CE activities across African Dementia Consortium (AfDC) sites to ensure cultural sensitivity and enhance recruitment and retention. The project seeks to empower CABs to promote national dementia policies by collaborating with policy-makers and advancing equitable dementia scienced and care in Africa.

Indexed as

Advisory CommitteesAlzheimer DiseaseBiomedical ResearchDementiaPatient SelectionAfricaHumansQualitative ResearchAfricaCommunity Advisory Boarddementiarecruitmentretention

Identifiers

PMID40739333
PMCPMC12310555

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