Recruiting and retaining persons with suspected Alzheimer's disease and related dementias for genetic studies in selected African countries: Lived realities of researchers

BackgroundGenomic research in dementia in Africa is of utmost importance based on recent reports from studies on African-Americans that the African ancestral gene is associated with a lower risk effect for developing AD. However, dementia-related genetic studies are still evolving in sub-Saharan Africa, with unique challenges influencing participant recruitment.ObjectiveThis study sought to identify key challenges of recruitment and retention how they were mitigated in the READD-ADSP Africa and 'Origins of AD in African ancestry' genetic studies.MethodsA qualitative narrative research design using in-depth interviews explored the challenges of recruiting participants and how these were managed by the nineteen stakeholders involved in the recruitment process from nine African countries participating in the African Dementia Consortium. An inductive thematic analysis was applied to code and analyze the data systematically.ResultsNineteen stakeholders from nine African countries, participating in READD-ADSP and 'Origins' studies were interviewed. Similar challenges were observed across most African countries, including the non-existing national dementia registry. Other challenges include language diversity, myths around blood collection, family dynamics, stigma, logistics, unmet expectations concerning incentives, fewer older controls and data privacy. Leveraging previous research programs, existing community engagement activities and client-doctor relationships were strategies used in addressing these challenges.ConclusionsThere are some unique challenges with recruiting and retaining participants in genetic studies in Africa. Strengthening community engagement and advocacy for genomic research, alongside a well-populated dementia registry in the African Dementia Consortium, could overcome these challenges and improve participant recruitment in genetic studies.

Authors

Institutions

Publication Details

Journal
Journal of Alzheimer s Disease
Published
2026-02-09
DOI
https://doi.org/10.1177/13872877261416066
Primary Topic
Ethics in Clinical Research
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

Recruiting and retaining persons with suspected Alzheimer's disease and related dementias for genetic studies in selected African countries: Lived realities of researchers

Osimhiarherhuo Adeleye, Alfred K. Njamnshi, Michelle Nichols, Chiamaka Okereke et al.
Journal of Alzheimer s Disease
Ethics in Clinical Research
article

Recruiting and retaining persons with suspected Alzheimer's disease and related dementias for genetic studies in selected African countries: Lived realities of researchers

Osimhiarherhuo Adeleye, Alfred K. Njamnshi, Michelle Nichols, Chiamaka Okereke, Kamada Lwere, Jean Ikanga, Oyedunni Arulogun, Adefolakemi Temitope Ogundele, Lawrence A. Adebusoye, Olorunyomi Olorunsogbon, Dorcas Olujobi, Mayowa Ogunronbi, Gabriel Ogunde, Kazeem Akinwande, Shadrack Osei Asibey, Christine Musyimi, M. Guerchet, Reginald Obiako, Nosakhare Osemwegie, Ruth Laryea, Albert Akpalu, Yared Z. Zewde, Wisdom Oguike, Victoria Mutiso, Godwin Ogbole, Thierry Adoukonou, Ernest Nwazor, Olufemi Oluwole Olowookere, Cynthia Olapeju Olawuyi, Kongnyu G. Njamnshi, Jeff Vance, Allison Caban‐Holt, Biniyam Ayele, MA Pericak-Vance, Tsimona Dinku, Paul Olowoyo, Oluwagbemiga Oyinlola, Joshua Odunayo AKINYEMI, A Damasceno, Rufus O Akinyemi, Godwin Osaigbovo, Sunday Adeniyi, Imelda Mandy, Adelina Claudia Simbine, David Ndetei, Njideka Okubadejo, Rajesh Kalaria, Oluwadamilola Ojo, Damas Andrea, Paul Nwani, Nekabari Bakor, Anthony J Griswold, Stella-Maria Paddick, Richard Walker, Abiodun Bello, Kolawole Wahab, Nakimbugwe Rheem, Akinola Moses, W Yembe Njamnshi, Olusegun Baiyewu, Amour Mkubila, Temitope Farombi, Sudha Seshadri, Kehinde Olajire, Goldie S Byrd, Bisoye Towolawi, Michael Cucarro, Fred Sarfo, Adesola Ogunniyi, Emmanuel Iwuozo, Mayowa Owolabi, Olufisayo Elugbadebo
article en

Abstract

BackgroundGenomic research in dementia in Africa is of utmost importance based on recent reports from studies on African-Americans that the African ancestral gene is associated with a lower risk effect for developing AD. However, dementia-related genetic studies are still evolving in sub-Saharan Africa, with unique challenges influencing participant recruitment.ObjectiveThis study sought to identify key challenges of recruitment and retention how they were mitigated in the READD-ADSP Africa and 'Origins of AD in African ancestry' genetic studies.MethodsA qualitative narrative research design using in-depth interviews explored the challenges of recruiting participants and how these were managed by the nineteen stakeholders involved in the recruitment process from nine African countries participating in the African Dementia Consortium. An inductive thematic analysis was applied to code and analyze the data systematically.ResultsNineteen stakeholders from nine African countries, participating in READD-ADSP and 'Origins' studies were interviewed. Similar challenges were observed across most African countries, including the non-existing national dementia registry. Other challenges include language diversity, myths around blood collection, family dynamics, stigma, logistics, unmet expectations concerning incentives, fewer older controls and data privacy. Leveraging previous research programs, existing community engagement activities and client-doctor relationships were strategies used in addressing these challenges.ConclusionsThere are some unique challenges with recruiting and retaining participants in genetic studies in Africa. Strengthening community engagement and advocacy for genomic research, alongside a well-populated dementia registry in the African Dementia Consortium, could overcome these challenges and improve participant recruitment in genetic studies.

Journal of Alzheimer s DiseaseVol. 110(2)
University of Port Harcourt (NG), Ahmadu Bello University (NG), University of Nairobi (KE), World Health Organization - Pakistan (PK), Ekiti State University (NG), Université de Yaoundé I (CM), University of Ghana (GH), Medical University of South Carolina (US), Inserm (FR), The University of Texas at San Antonio Health Science Center (US), Eduardo Mondlane University (MZ), Christian Medical College, Vellore (IN), Federal University of Agriculture, Abeokuta (NG), University of Ibadan (NG), Benue State University (NG), University of Lagos (NG), North Tyneside General Hospital (GB), University of Port Harcourt Teaching Hospital (NG), Federal Neuro Psychiatric Hospital (NG), University College Hospital, Ibadan (NG), Lagos University Teaching Hospital (NG), Korle Bu Teaching Hospital (GH), Kwame Nkrumah University of Science and Technology (GH), The University of Dodoma (TZ), Afe Babalola University (NG), University of Kinshasa (CD), Gateshead Health NHS Foundation Trust (GB), Institute for Neurodegenerative Disorders (US), Université de Parakou (BJ), Université Catholique du Congo (CD), Lagos State University Teaching Hospital (NG), Université d'Abomey-Calavi (BJ), Dr. John T. Macdonald Foundation (US), NIHR Newcastle Biomedical Research Centre (GB), Kilimanjaro Christian Medical Centre (TZ), Federal Medical Centre (NG), Africa Mental Health Foundation (KE), Nnamdi Azikiwe University Teaching Hospital (NG), Jos University Teaching Hospital (NG), Newcastle Hospitals - Campus for Ageing and Vitality (GB), University of Ilorin Teaching Hospital (NG), Institut d’Epidémiologie Neurologique et de Neurologie Tropicale (FR), University of Nigeria Teaching Hospital (NG), Institut de Recherche pour le Développement (FR), Addis Ababa University (ET), Wake Forest University (US), McGill University (CA), Université de Limoges (FR), Makerere University (UG), Newcastle University (GB), Olabisi Onabanjo University (NG), Rivers State University (NG)
Partnerships for the goals
Openalex Percentile: Top 65%
Ethics in Clinical Research
DOISourceOpenAlex
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.