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 Farombi¹, Oyedunni Arulogun², Michelle Nichols³, Olorunyomi F Olorunsogbon^{2

4}, Mayowa Ogunronbi⁴, Oyedolapo Oyedola⁴, Eniola Cadmus⁵, Babatunde Ojebuyi⁶, Taofeek A Sanni⁷, Victoria Mutiso⁸, Mubashir Uthman⁹, Abdullateef Gbenga Sule¹⁰, Joy Louise Gumikiriza-Onoria¹¹, Godspower Chibuike Onunka¹², Benedict Calys-Tagoe¹³, Tsimona Dinku¹⁴, Ifeoma Adaigwe Amaechi¹⁵, Adedoyin O Ogunyemi¹⁶, Obo Y Onibon¹⁷, Daniel E Ukpabi¹⁸, Hypolite O Ezin¹⁷, Solomon Gyabaah¹⁹, Tolulope Afolaranmi²⁰, Osimhiarherhuo Adeleye^{12

21

22}, Nathaniel Coleman²³, Innocent Mwombeki²⁴, Damas Andrea²⁴, Albertino Damasceno²⁵, Abiodun Bello²⁶, Kolawole Wahab²⁶, Christine Musyimi⁸, David Ndetei^{8

27

28}, Paul Nwani²⁹, W Yembe Njamnshi³⁰, Olufisayo Elugbadebo³¹, Reginald Obiako³², Paul Olowoyo³³, Yared Z Zewde¹⁴, Biniyam A Ayele¹⁴, Njideka Okubadejo³⁴, Godwin Osaigbovo³⁵, Fred Sarfo³⁶, Albert Akpalu³⁷, Lwere Kamada¹¹, Olusegun Baiyewu³¹, Nakasujja Noeline¹¹, Adefolakemi Temitope Ogundele³⁸, Alfred K Njamnshi³⁰, Emmanuel Iwuozo³⁹, Thierry Adoukonou⁴⁰, Judith Boshe⁴¹, Stella-Maria Paddick⁴², Ernest Okwundu Nwazor⁴³, Nosakhare Osemwegie⁴⁴, Jean Ikanga⁴⁵, Sudha Seshadri⁴⁶, Mayowa Owolabi^{22

47}, Walker Richard⁴⁸, Goldie Byrd⁴⁹, Rajesh N Kalaria⁵⁰, Adesola Ogunniyi²², Margaret Pericak-Vance⁵¹, Rufus Akinyemi^{4

22

47}

Affiliations

¹ Tony Anenih Geriatric Center, University College Hospital, Ibadan, Oyo, Nigeria.
² Department of Health Promotion and Education, Faculty of Public Health, University of Ibadan, Ibadan, Oyo, Nigeria.
³ College of Nursing, Medical University of South Carolina, Charleston, South Carolina, USA.
⁴ Institute for Advanced Medical Research & Training, College of Medicine, Neuroscience and Ageing Unit, University of Ibadan, Ibadan, Oyo, Nigeria.
⁵ Department of Community Medicine, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
⁶ Department of Communication and Language Arts, Faculty of Arts, University of Ibadan, Ibadan, Nigeria.
⁷ Department of Community Medicine, Afe Babalola University, Ekiti State and Federal Teaching Hospital, Ido-Ekiti, Ekiti, Nigeria.
⁸ Africa Mental Health Research and Training Foundation, Nairobi, Kenya.
⁹ Department of Epidemiology & Community Health, Faculty of Clinical Sciences, College of Health Sciences, University of Ilorin, Ilorin, Nigeria.
¹⁰ Department of Family Medicine, Ahmadu Bello University Teaching Hospital, Zaria, Kaduna, Nigeria.
¹¹ Makerere University College of Health Sciences, Kampala, Uganda.
¹² Neuropsychiatric Hospital, Ita-Oshin, Abeokuta, Ogun, Nigeria.
¹³ Department of Community Health, University of Ghana Medical School, Korle Bu, Accra Ghana.
¹⁴ College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia.
¹⁵ Department of Medical Rehabilitation, Faculty of Health Sciences and Technology, College of Health Sciences, Nnamdi Azikiwe University, Anambra, Nigeria.
¹⁶ Department of Community Health and Primary Care, College of Medicine, University of Lagos, Lagos, Nigeria.
¹⁷ Department of Sociology and Anthropology, Laboratory of Gender, Dynamics of Social Spaces and Health, University of Parakou, Cotonou, Benin.
¹⁸ Department of Epidemiology and Community Health, Benue State University Teaching Hospital, Makurdi, Benue, Nigeria.
¹⁹ Komfo Anokye Teaching Hospital, Kumasi, Ghana.
²⁰ Department of Community Medicine, College of Health Sciences, University of Jos, Jos, Plateau, Nigeria.
²¹ Federal Medical Centre, Olabisi Onabanjo Way, Abeokuta, Ogun, Nigeria.
²² Department of Medicine, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
²³ Department of Obstetrics and Gynaecology, University of Ghana Medical School, Korle Bu, Accra Ghana.
²⁴ Mirembe National Mental Health Hospital & University of Dodoma, Dodoma City, Tanzania.
²⁵ Faculty of Medicine, Eduardo Mondlane University, Maputo, Mozambique.
²⁶ Division of Neurology, Department of Medicine, University of Ilorin & University of Ilorin Teaching Hospital, Ilorin, Kwara, Nigeria.
²⁷ Department of Psychiatry, University of Nairobi, Nairobi, Kenya.
²⁸ World Psychiatric Association Collaborating Centre for Research and Training, Nairobi, Kenya.
²⁹ Department of Medicine, Nnamdi Azikiwe University Teaching Hospital, Nnewi, Anambra, Nigeria.
³⁰ Brain Research Africa Initiative, Cameroon & Neuroscience Lab, FMBS, The University of Yaoundé I, Yaoundé, Cameroon.
³¹ Department of Psychiatry, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
³² Department of Medicine, Ahmadu Bello University, Zaria, Kaduna, Nigeria.
³³ Department of Medicine, College of Medicine and Health Sciences, Afe Babalola University, Nigeria and Federal Teaching Hospital, Ido Ekiti, Ekiti, Nigeria.
³⁴ Department of Medicine, Faculty of Clinical Sciences, College of Medicine, Neurology Unit, University of Lagos, Lagos, Nigeria.
³⁵ University of Jos/Jos University Teaching Hospital, Jos, Plateau, Nigeria.
³⁶ Department of Medicine, Kwame Nkrumah University of Science & Technology, Kumasi, Ghana.
³⁷ Department of Medicine, University of Ghana Medical School, Ghana//Korle Bu Teaching Hospital, Accra, Ghana.
³⁸ Psychogeriatric Unit, Neuropsychiatric Hospital, Abeokuta, Ogun, Nigeria.
³⁹ Neurology Unit, Benue State University and Benue State University Teaching Hospital, Makurdi, Benue, Nigeria.
⁴⁰ Department of Neurology, University of Parakou, Parakou, Benin.
⁴¹ Department of Medicine, Kilimanjaro Christian Medical College, Moshi, Tanzania.
⁴² Translational and Clinical Research Institute, Newcastle University, UK/Gateshead Health NHS Foundation Trust, Gateshead, Newcastle upon Tyne, UK.
⁴³ Rivers State University Teaching Hospital, Port Harcourt, Rivers, Nigeria.
⁴⁴ Department of Medicine, University of Port Harcourt, Port Harcourt, Rivers, Nigeria.
⁴⁵ Department of Psychiatry, School of Medicine, University of Kinshasa and Catholic University of Congo, Kinshasa, Democratic Republic of Congo.
⁴⁶ Glenn Biggs Institute for Alzheimer's & Neurodegenerative Diseases, University of Texas Health Sciences Center, San, Texas, USA.
⁴⁷ Center for Genomic and Precision Medicine, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
⁴⁸ Department of Medicine, North Tyneside General Hospital, North Shields, UK.
⁴⁹ Maya Angelou Centre for Health Equity, School of Medicine, Wake Forest University, Winston Salem, North Carolina, USA.
⁵⁰ Translational and Clinical Research Institute, Newcastle University, NIHR Biomedical Research Building, Campus for Ageing and Vitality, Newcastle upon Tyne, UK.
⁵¹ John 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.

PMID: 40739333
PMCID: PMC12310555
DOI: 10.1002/alz.70529

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 et al. Alzheimers Dement. 2025 Aug.

. 2025 Aug;21(8):e70529.

doi: 10.1002/alz.70529.

Authors

Affiliations

¹ Tony Anenih Geriatric Center, University College Hospital, Ibadan, Oyo, Nigeria.
² Department of Health Promotion and Education, Faculty of Public Health, University of Ibadan, Ibadan, Oyo, Nigeria.
³ College of Nursing, Medical University of South Carolina, Charleston, South Carolina, USA.
⁴ Institute for Advanced Medical Research & Training, College of Medicine, Neuroscience and Ageing Unit, University of Ibadan, Ibadan, Oyo, Nigeria.
⁵ Department of Community Medicine, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
⁶ Department of Communication and Language Arts, Faculty of Arts, University of Ibadan, Ibadan, Nigeria.
⁷ Department of Community Medicine, Afe Babalola University, Ekiti State and Federal Teaching Hospital, Ido-Ekiti, Ekiti, Nigeria.
⁸ Africa Mental Health Research and Training Foundation, Nairobi, Kenya.
⁹ Department of Epidemiology & Community Health, Faculty of Clinical Sciences, College of Health Sciences, University of Ilorin, Ilorin, Nigeria.
¹⁰ Department of Family Medicine, Ahmadu Bello University Teaching Hospital, Zaria, Kaduna, Nigeria.
¹¹ Makerere University College of Health Sciences, Kampala, Uganda.
¹² Neuropsychiatric Hospital, Ita-Oshin, Abeokuta, Ogun, Nigeria.
¹³ Department of Community Health, University of Ghana Medical School, Korle Bu, Accra Ghana.
¹⁴ College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia.
¹⁵ Department of Medical Rehabilitation, Faculty of Health Sciences and Technology, College of Health Sciences, Nnamdi Azikiwe University, Anambra, Nigeria.
¹⁶ Department of Community Health and Primary Care, College of Medicine, University of Lagos, Lagos, Nigeria.
¹⁷ Department of Sociology and Anthropology, Laboratory of Gender, Dynamics of Social Spaces and Health, University of Parakou, Cotonou, Benin.
¹⁸ Department of Epidemiology and Community Health, Benue State University Teaching Hospital, Makurdi, Benue, Nigeria.
¹⁹ Komfo Anokye Teaching Hospital, Kumasi, Ghana.
²⁰ Department of Community Medicine, College of Health Sciences, University of Jos, Jos, Plateau, Nigeria.
²¹ Federal Medical Centre, Olabisi Onabanjo Way, Abeokuta, Ogun, Nigeria.
²² Department of Medicine, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
²³ Department of Obstetrics and Gynaecology, University of Ghana Medical School, Korle Bu, Accra Ghana.
²⁴ Mirembe National Mental Health Hospital & University of Dodoma, Dodoma City, Tanzania.
²⁵ Faculty of Medicine, Eduardo Mondlane University, Maputo, Mozambique.
²⁶ Division of Neurology, Department of Medicine, University of Ilorin & University of Ilorin Teaching Hospital, Ilorin, Kwara, Nigeria.
²⁷ Department of Psychiatry, University of Nairobi, Nairobi, Kenya.
²⁸ World Psychiatric Association Collaborating Centre for Research and Training, Nairobi, Kenya.
²⁹ Department of Medicine, Nnamdi Azikiwe University Teaching Hospital, Nnewi, Anambra, Nigeria.
³⁰ Brain Research Africa Initiative, Cameroon & Neuroscience Lab, FMBS, The University of Yaoundé I, Yaoundé, Cameroon.
³¹ Department of Psychiatry, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
³² Department of Medicine, Ahmadu Bello University, Zaria, Kaduna, Nigeria.
³³ Department of Medicine, College of Medicine and Health Sciences, Afe Babalola University, Nigeria and Federal Teaching Hospital, Ido Ekiti, Ekiti, Nigeria.
³⁴ Department of Medicine, Faculty of Clinical Sciences, College of Medicine, Neurology Unit, University of Lagos, Lagos, Nigeria.
³⁵ University of Jos/Jos University Teaching Hospital, Jos, Plateau, Nigeria.
³⁶ Department of Medicine, Kwame Nkrumah University of Science & Technology, Kumasi, Ghana.
³⁷ Department of Medicine, University of Ghana Medical School, Ghana//Korle Bu Teaching Hospital, Accra, Ghana.
³⁸ Psychogeriatric Unit, Neuropsychiatric Hospital, Abeokuta, Ogun, Nigeria.
³⁹ Neurology Unit, Benue State University and Benue State University Teaching Hospital, Makurdi, Benue, Nigeria.
⁴⁰ Department of Neurology, University of Parakou, Parakou, Benin.
⁴¹ Department of Medicine, Kilimanjaro Christian Medical College, Moshi, Tanzania.
⁴² Translational and Clinical Research Institute, Newcastle University, UK/Gateshead Health NHS Foundation Trust, Gateshead, Newcastle upon Tyne, UK.
⁴³ Rivers State University Teaching Hospital, Port Harcourt, Rivers, Nigeria.
⁴⁴ Department of Medicine, University of Port Harcourt, Port Harcourt, Rivers, Nigeria.
⁴⁵ Department of Psychiatry, School of Medicine, University of Kinshasa and Catholic University of Congo, Kinshasa, Democratic Republic of Congo.
⁴⁶ Glenn Biggs Institute for Alzheimer's & Neurodegenerative Diseases, University of Texas Health Sciences Center, San, Texas, USA.
⁴⁷ Center for Genomic and Precision Medicine, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
⁴⁸ Department of Medicine, North Tyneside General Hospital, North Shields, UK.
⁴⁹ Maya Angelou Centre for Health Equity, School of Medicine, Wake Forest University, Winston Salem, North Carolina, USA.
⁵⁰ Translational and Clinical Research Institute, Newcastle University, NIHR Biomedical Research Building, Campus for Ageing and Vitality, Newcastle upon Tyne, UK.
⁵¹ John 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.

PMID: 40739333
PMCID: PMC12310555
DOI: 10.1002/alz.70529

Abstract

Introduction: The 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.

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

Results: Twenty-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.

Keywords: Africa; Community Advisory Board; dementia; recruitment; retention.

PubMed Disclaimer

Conflict of interest statement

The authors reported that there are no competing interests to declare.

Figures

**FIGURE 1**
Participant's recruitment and screening flow chart.

See this image and copyright information in PMC

References

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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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Miscellaneous