Scoping review of the ethical regulations for Alzheimer's Disease and Alzheimer's Disease Related Dementia research in Africa

We conducted a scoping review to ascertain the landscape of ethics regulations for AD/ADRD research in Africa using Arksey and O'Malley's framework. We sourced regulations from the International Compilation of Human Research Standards. We included regulations from 14 countries published between 1997 and 2020. Provisions in the regulations applicable to research in AD/ADRD were part of broader sub‐provisions for research such as with persons under legal disability. Regulations mostly required the appointment of Legally Authorised Representatives, as a major protection for persons with AD/ADRD. Provisions supporting capacity assessment and advance directives were only provided in regulations from five and two countries respectively. No regulation cited the Convention on the Rights of Persons with Disabilities as a foundational instrument for its provisions. In conclusion, regulations specifically applicable to research among AD/ADRD or other cognitively impaired persons in Africa are scarce and provisions in existing regulations mostly lack specificity for practical implementation

Business · Convention · Convention on the Rights of Persons with Disabilities · Dementia · Disease · Pathology · Political science · Psychiatry · Research ethics · Biomedical Ethics and Regulation · Ethics in Clinical Research · Health Systems, Economic Evaluations, Quality of Life · Law · Medicine · Gerontology