社区咨询委员会在提高非洲阿尔茨海默病及相关痴呆症研究的招募率和保留率方面的作用：来自READD-ADSP研究的经验。
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.
作者信息
Farombi Temitope, Arulogun Oyedunni, Nichols Michelle, Olorunsogbon Olorunyomi F, Ogunronbi Mayowa, Oyedola Oyedolapo, Cadmus Eniola, Ojebuyi Babatunde, Sanni Taofeek A, Mutiso Victoria, Uthman Mubashir, Sule Abdullateef Gbenga, Gumikiriza-Onoria Joy Louise, Onunka Godspower Chibuike, Calys-Tagoe Benedict, Dinku Tsimona, Amaechi Ifeoma Adaigwe, Ogunyemi Adedoyin O, Onibon Obo Y, Ukpabi Daniel E, Ezin Hypolite O, Gyabaah Solomon, Afolaranmi Tolulope, Adeleye Osimhiarherhuo, Coleman Nathaniel, Mwombeki Innocent, Andrea Damas, Damasceno Albertino, Bello Abiodun, Wahab Kolawole, Musyimi Christine, Ndetei David, Nwani Paul, Njamnshi W Yembe, Elugbadebo Olufisayo, Obiako Reginald, Olowoyo Paul, Zewde Yared Z, Ayele Biniyam A, Okubadejo Njideka, Osaigbovo Godwin, Sarfo Fred, Akpalu Albert, Kamada Lwere, Baiyewu Olusegun, Noeline Nakasujja, Ogundele Adefolakemi Temitope, Njamnshi Alfred K, Iwuozo Emmanuel, Adoukonou Thierry, Boshe Judith, Paddick Stella-Maria, Nwazor Ernest Okwundu, Osemwegie Nosakhare, Ikanga Jean, Seshadri Sudha, Owolabi Mayowa, Richard Walker, Byrd Goldie, Kalaria Rajesh N, Ogunniyi Adesola, Pericak-Vance Margaret, Akinyemi Rufus
机构信息
Tony Anenih Geriatric Center, University College Hospital, Ibadan, Oyo, Nigeria.
Department of Health Promotion and Education, Faculty of Public Health, University of Ibadan, Ibadan, Oyo, Nigeria.
出版信息
Alzheimers Dement. 2025 Aug;21(8):e70529. doi: 10.1002/alz.70529.
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.
引言
阿尔茨海默病测序项目中的阿尔茨海默病多样性遗传队列招募与保留（READD-ADSP）项目的设立，旨在弥合非洲在阿尔茨海默病及相关痴呆症（ADRD）研究方面的差距。我们通过探讨文化敏感参与、社区信任建立和利益相关者参与如何影响研究参与，研究了社区咨询委员会（CABs）在改善非洲ADRD研究中参与者招募与保留方面的作用。
方法
采用多地点、多阶段的定性研究方法，包括设立CABs、初步规划会议以及社区参与和招募活动。
结果
在9个非洲痴呆症联盟（AfDC）成员国的14个研究地点设立了21个CABs（141名成员）。召开了共同创造规划会议，开展了针对脑健康的文化敏感外展活动、痴呆症认知宣传和招募工作。
讨论
事实证明，在READD-ADSP项目中设立CABs有助于共同创造适合非洲文化且以社区为中心的策略，以促进非洲ADRD研究中的参与者招募与保留。
要点
阿尔茨海默病测序项目中的阿尔茨海默病多样性遗传队列招募与保留（READD-ADSP）项目利用社区参与研究（CER）框架制定社区参与计划，并设立社区咨询委员会（CABs）以提高参与者的招募与保留率。有必要规范CER实践，并在非洲痴呆症联盟（AfDC）各地点推广因地制宜且符合文化背景的CE活动，以确保文化敏感性并提高招募与保留率。该项目旨在赋予CABs权力，通过与政策制定者合作来促进国家痴呆症政策，并在非洲推动公平的痴呆症科学研究和护理。
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