Recruitment Strategies for a Nonhospital-Based Academic Rare Disease Biobank in South Africa

Introduction: Rare disease research in South Africa (SA) faces significant challenges, including limited prioritization and awareness, which hinder advancements in patient care and scientific discovery. This article explores the recruitment strategies employed by the Centre for Human Metabolomics (CHM) Biobank, a nonhospital-based academic rare disease biobank, to address these challenges. Methods: We explain the consent process and documents as well as the three recruitment models employed, namely (1) Recruitment via referring clinician, (2) implementation of monthly diagnostic follow-up sessions, and (3) recruitment of patients for specific projects through clinic-based recruitment drives. Discussion: We discuss the benefits as well as the challenges of each model. Challenges included clinician and patient time constraints, distrust from current consent practices, and limited public awareness. We elaborate on future strategies to address these gaps such as simplifying consent, expanding recruitment sites, collaborating with clinical, academic and public institutions, and raising public awareness of the role of the CHM Biobank. Conclusions: From the models employed over the past 5 years, it is evident that recruitment is most effective when patients perceive a direct benefit, such as involvement in active projects. These strategies outlined in the discussion are crucial for ensuring the CHM Biobank's sustainability, diversity, and its impact on scientific research and patient outcomes in SA.